@girlwithMCTD goes gluten free...

Yup! So I've finally decided to give it a try. I actually have quite a few of the physical symptoms of celiac and a few years ago, I was tested for celiac with a blood test. It came back negative. Thinking nothing of it, I continued on with my life as normal. I've had many people tell me that I should try the gluten free diet and see if it would help, but I always think back on that test, and all the hassle that goes into the whole thing and decide I'm ok.

Last week, I was talking to a good friend before she finished packing up and moved to Houston. We got to talking about all the things we'd missed catching up on while she was in France. I told her about my flare up in April, she told me she'd gone gluten free. Her uncle has a diagnosed and rather serious case of celiac, and she has a thyroid condition, so she decided to give it a try. It is hereditary. And those of us with auto-immune issues know that its no secret that if you have one, you're likely to have a few auto-immune problems/conditions. Sadly, its just the nature of the game we call life.

Julie was telling me about how much better she felt since she went gf. Increase of energy, better moods, etc, then we got to talking about me. Haha. She was really convincing. She told me about a documentary she saw that explained how the wheat we're all eating today, has a much higher level of gluten than it did way back in the day. Because of genetic engineering seeds, and the plants that come from them, have had the gluten beefed up so that crops grow more uniformly and are easier to harvest. Which makes it fantastic for us. This is a major reason stated in the documentary for the increase of celiac diagnosis made in recent time. I haven't seen the film, so I'm going to assume that they also mentioned the betterment of medical science and understanding of autoimmune conditions, and the many who've stood up to inform others of this issue for the increase as well.

Sadly, Celiac is still one of the lesser understood autoimmune conditions out there, and there is still a lot that is unknown. Its also one of the hardest to definitively diagnose. Because of the many symptoms that are spread across the spectrum are also widely associated with many other AI issues, its not the first condition considered. Often, it is misdiagnosed. A condition that many state is with you from birth, it remains dormant until it one day hits you and becomes a major issue. I have a close friend who was diagnosed with celiac a few years ago, so I am fortunate to have a better than average understanding of the disease and what I need to avoid. Still, I'm doing as I always do when I make a decision and take the plunge. I'm researching the heck out of it.

I didn't decide to start the diet right away. I applied for a job in Ohio a couple of weeks ago, and I've been waiting to hear back if I'm considered a strong candidate or if I may get the job. I don't know much about my status other than the fact that before I applied they weren't completely happy with the pool of candidates and were calling HR to see if they'd had any more applications. I got an email last Thursday letting me know that I passed the first level of review, human resources, and that my application packet had been forwarded to the director of the department. I'm very excited about the job and all the aspects of it I'd be involved in. Its in the creative services department of Cedarville University, the school I attended after HS graduation and LOVED.  I've been periodically checking their website for job postings and this one got me very excited. I've been thinking about going back to school and getting my BA in Graphic Design, but I wanted to be employed somewhere that may help me pay for it before I started the whole process. CU is a place I know and love and is my first choice for going back to school. The department is also where all of the graphic designers work. That is what cinched it for me. I was in, wholeheartedly. Before that, the idea of striking out on my own, after a year of unemployment, and then working at a coffee shop for below min wage +tips, gave me pause. Right now, I'm blessed with the ability to live with my mom and save on expenses during my limited budget. I still haven't been making enough to build up my savings, which I'd unfortunately had to deplete while unemployed...and sick...without insurance... and I was unsure if starting out like that was something I'd be comfortable doing. Finding out it was my dream job, made all the probably penny scrapping and the possible second job I may need in the beginning, worth it. By far. I'm super excited about the opportunity, but as I said, right now, all I know is that they would like the person they pick to start in the beginning of February. Which, as we all know, is SOON. I've been playing it hopeful, and looking around for places to live and possible roommate connections. I don't know how it will end up, but I'm just putting it all in God's hands and know that if this is where I'm supposed to be, it will all fall into place. All that to say, I was originally planning to wait until I knew about the job and see where I'd be financially (with a move, and rent, etc) before making the switch.

GF, especially right at first. You pretty much have to start all over again with most everything. If it doesn't have gluten in it, it most probably got cross contaminated at some point. I'm trusting pretty much nothing I already have open in my kitchen. Only those items in shakers that I know haven't been opened to scoop stuff out of is being used right now, everything else is being replaced.
And labeled. And placed in their own containers. I'm taking no chances that other items get into packaging or someone else accidentally contaminates something. I started the diet on Monday. After all of my internet scouring, the questions and discussions with friends dealing with going GF, and one friend who has a son with celiac, and all the book reading I've been doing, I decided that I couldn't wait any more. The more I know, and the more I read, the more I've come to realize that I may just have celiac, and this diet may work, or at the very least, going GF could help the underlying symptoms of my other AI diseases. So far, I haven't noticed much. Unless you count the fact that I've spent a bundle on plastic ware and new food items....haha. Actually, I haven't spent a ton on food yet. We do have quiet a bit of canned goods that are edible for me, and I went grocery shopping with my mom the other day, and she spent a ton of money helping me increase my options. She's gotten behind this with me 100% and has been a big support.

Right now, I'd say, I'm still very much on the learning side of it all. I'm still on the cautious side, and asking a million questions. Fortunately, I'm surrounded by a few caring friends with great experience and who have no problems answering my many questions. I'm blessed with the support of those who understand nearby...another reason I decided not to wait. So here begins my GF journey. I'll be sure to keep you posted!

Hair today, gone tomorrow...

Over the past month and a half, I've been experiencing some serious hair loss. My hair has always been ridiculously thick, so to the average observer, you can't really tell. But if you know whats going on, you can tell. And as the title suggests, my biggest fear is that it will disappear in the near future. I've been losing hair in increasingly larger chunks as time has gone on, and the question that haunts me is this: how much longer can this continue before other people start to notice and before there's nothing left to lose? Seriously. I've joked to my sister that if I could untangle the mess that I've been losing, I'd have enough to make a decent wig in about a week. It's been that bad.

Today, I must admit, has been the worst of it. When I pulled out my pony tail holder there was a tangled clump attached to the band. I've been gently running my fingers through my hair before washing it lately, trying to limit the amount that could get stuck in the drain. And today there was a lot--pre wash.... Another couple clumps while washing, and a surprising amount after while combing it out before drying, and I have to say, I almost cried when I saw how much hair was in my hand that time. But I was in a hurry, running late for church so I brushed it off (some of it quite literally...) and kept going. When I got home and saw how much hair was in the trash can next to the sink, thats when I lost it. Today, I cried because I'm losing my hair. Even writing this I'm fighting back tears. It may sound vain and superficial, but what 27 year old woman can deal with the fact that they're losing their hair? You may be a better person than me, but I'm not taking it well. At least not today.

I've been ignoring it to this point, but when my mom, the nurse, who usually tells me its nothing to worry about and its not worth bothering the dr, tells me that maybe I should call and ask if theres something that would help....well that just broke down my last bit of control and indecisiveness over there being a problem. I can certainly tell that its thinner. I'm shocked when I pull back my hair and notice how much of a difference there is in how thick it used to be. But then I'm used to what it always used to feel like in relation to what is there now. The fact that she can tell that it visibly looks thinner, not in a patchy, bald-spot kinda way (Thank God!, and I know, because I've been carefully, almost obsessively, checking) but in a loss of volume kinda way, then there is definitely something wrong that I want to try to put a stop to before its too late. This may seem super dramatic, but I'm getting desperate. I've lost a lot, and I'm worried it will continue and I won't be able to stop it.

There are many reasons why I'm freaking out right now. For starters, and the most obvious...I'm a girl. Yup. We get up early and spend hours working on our hair, trying to get it just right so we feel like we look fabulous. Ok, so I've never gotten up early to work on my hair, and I think I can count on one hand the times I've spent more than half an hour on it (its typically around 15-20 min, including washing it) but the theory of girl pride of our hair still remains. I don't consider myself a vain person, and I hope no one else would, but what 20 something woman wouldn't have self-esteem issues over hair loss? Not to mention the fact that I'm a single woman experiencing hair loss. Whats the first thing a guy notices about a girl? What we look like. And lets be honest. Theres enough to be self-conscious about when you like someone, want to date, or you are dating that you are worrying about, you don't need to add hair loss to the mix on top of it all.

I just started a new job. No one there knows that I have health problems. Theres

I'm trying to decide if I should include photos. Part of me is wants to hide the glaring details of how much is in there, a small voice piping up that hey, who wants to see the contents of my trash cans? And I quite literally started tearing up when I saw how much was there when walking by it...seriously. Its. that. bad. I've even checked the mirror a few times just to appease my own fear that yes. its still there, and I still look normal.  Maybe I will include pics....

Pic 1 is what I lost while washing my hair, 2 is from after washing, and 3 are random hair balls I found on the floor. Seriously, this is embarrassing...

I guess it really hit home, when I told my sister that I didn't think I'd go for a walk with her today, because of how much I lost this morning, because I didnt want to have to wash it again today and go through the whole ordeal again. And she responded with a text asking me if I was feeling alright. And the truth of it is, that I am. I feel pretty normal, aside from being a bit sore when I get up. And its really only in the back of my ankle, it feels kinda as if I over exercised and my muscle is tight, and it goes away after a few minutes of moving. Other than that, I'm just having to readjust to getting used to sitting for most of the day again. And my job really has a lot of up and down time so it hasn't really been a big issue either. So really not much physically to complain about. Unless of course, you count losing your hair as a physical issue... :) Its more of a psychological thing than anything I guess. So that about sums up my day. I've been losing more and more lately, and today I hit my breaking point. I'm feeling a mite depressed, and hoping to find an easy fix. Praying that it won't last long, and that soon I'll be laughing about this whole situation. Please??

Meanwhile, I'm going to try to end my pity-party...I think I'll start by taking out the trash....

Invisible Illness: Live it in silence? or speak up for awareness?

There's a reason they call it "invisible illness". To most everyone around us, we aren't any different than they are. We look the same. We don't look sick. They don't understand how we can beg off of doing something, because we don't feel well, especially when, more often than not, we'd done the same thing just a few days earlier. We've gotten so well at appearing "normal" and well when we're around others, that we can be sicker than they've ever experienced, and still look like its just another day at the office, or another night out with friends.

If I called off work EVERY time I was sick or felt like crap, I wouldn't have a job. I'd probably only make four or five days a month. The only times I call off work, are during serious flare ups with my ridiculously high temps and the feeling of being hit by a mac truck. Even then, half of that flare up can find me sitting at my desk at work, not willing to give up those sick days, when I know that it CAN get worse. If its between sitting in bed at home or sitting in my chair at work, I'll be at work. I may look less than healthy and popping tylenol every four hours, and move a ton slower, but I'm there. In fact, if I have another flare up, no matter what happens, I'll probably still be here. Because my last serious flare up back in January, I used four of my six sick days, and I had to use the other two on trips to the Cleveland clinic.

Added "bonus" to our lovely "friends", not only can we burn through those sick days like none other, we also have the added expense of most often having a guarantee that we'll actually hit that seemingly reasonable insurance deductible in the first six months. Then there's the copays and other expenses that go along with it all. ER visit copays, dr visit copays (during a serious flare up, can be as often as three or four times a month, sometimes per dr...) with the occasional specialist thrown in for good measure, prescription copays, lab work fees, travel fees, this list could go on forever really... In fact, I hit my $750 insurance deductible by February 4th this year. Add to that the $100 ER visit copay and countless other dr and rx copays, and you can understand why I'm still making payments on my healthcare costs from over six months ago.

So: no more sick days, equals little chance I'll actually be calling off. Because we have no more paid time off, and with all the other added, and often unplanned/unexpected expenses mean we can little afford to take a day off (or several) without pay. All that to say, we're so used to being sick, that we're experts at hiding the fact that we are. Because if people around us knew what we were going through (not only wouldn't they believe it half the time) they'd get as sick of it's frequency and limitations as we do. So we grin and bear it. Or rather, we pretend nothing else is wrong and go on with our lives. We all do it to some extent. We may like to believe we're being open and sincere with those around us about how things are going and how we're feeling, but really, even we get tired of it.

I know I get tired of explaining myself and my disease. Not at the fact that someone cares enough to ask and wants to understand, but at the fact that I can actually sense myself going into "information mode". I've explained what I have, what I know about it , and how it affects me so many times, that I know I'm reciting a speech I've told countless times before, and it bores ME. I can only imagine how the person listening to me is feeling. You start to wonder if they'll regret asking, but hey...they did ask right? Eventually you just assume everyone is as bored at hearing about your "problems" as you are the whole experience. But is that really our best option?

I don't think there's an easy or clear answer to that question. Sadly, we're still in a world where employers, despite EOE laws and restrictions, are combing the net and looking for reasons you may or may not be a great fit. And even if you had to choose between two qualified people, we're still likely to be passed over because the other guy/gal will likely not be taking full advantage of the benefits package. Even in our personal life, we're tempted to stay silent, because we're afraid our friends (as well as those coworkers) will treat us differently. I absolutely HATE pity. Can't help it, but it grates on my nerves to see that look dawn on someones face when you know they're connecting with what it all means (or rather the worst case scenario playing out in their head) and they tell you how sorry they are. I think we all are super sensitive to it, but really, if you learn that a friend/relative/whomever got sick, etc don't you feel bad for them too? I have to remind myself that most peoples reactions are not pity. There's sympathy and the occasional empathy, and we can't take it too personally when a persons natural inclination is to apologize. I mean really, its not like they gave it to me...sorry, one of my pet peeves... :)

On the other hand, and this is the important part, if we stay silent about what we have and how it affects us, we're cheating ourselves as well as those around us. For starters, as much as we'd like to insist that what we have plays no part of who we are, we're not being completely honest with anyone. It may not be an important part of who we are, but everything that we experience plays a part in molding us into the person we become. It's just life. Our past and the happenings of our current circumstances all shape our personality and the way we act, react, and interact. We can't change that. It's going to happen. And if we aren't sharing the parts of us that make us who we are, no matter how insignificant we believe they are, or how little we wish to acknowledge them, are people really getting to know us? Do they really know who I am?

They certainly can't understand why I choose not to push myself physically, when it seems to all around me like I could do it if I really tried. They can't understand why I could possibly need to see a dr and visit a pharmacist so many stinking times a month, or how/why the top of my dresser or the bathroom counter looks like a shelf at your local walgreens. They won't understand why I can practically quote medical information, symptoms, drug facts, doses, interactions, what they're used for etc. Seriously, I'm a walking encyclopedia...be impressed. :) My sarcasm becomes more distinct and comes into play more often when dealing with uncomfortable topics or to joke around with my friends/coworkers or whoever when discussing the "facts". Its how I cope. Its a part of my personality. And if we're talking about how I'm doing and how I feel, and you can almost feel the sarcasm seeping into the conversation, don't feel bad you asked, don't feel like you have to stop asking. You should actually feel flattered that you're not getting the canned/recorded version of my explanation, and if you feel like you're getting it, don't be offended, I probably just feel like crap and am operating on autopilot.

I'll leave you with one last reason we need to share. A majority (probably most, but I'm gonna be careful here) of autoimmune diseases are unpredictable, play out differently in different people, and are occasionally rare. Not even Dr's and scientist have figured them out completely. There's still a world of unknown and if we keep things to ourselves, we're only hurting ourselves. We need to be open about things so that progress can be made. We need to be honest and share because while we may feel we're a walking encyclopedia, there are people out there searching for information, and we're the best informants out there. (And quite frankly, its healthier to let out our frustrations and feelings and sharing with those around us. Stress just makes things worse, and life has enough stress.)

I started this blog, because I was searching for a way to vent and let out what I was feeling about the mess that my disease was making of my life. I was holding it all in, and it was driving me crazy. I didn't think anyone wanted to hear it. I didn't want to push people away because I was complaining about my problems. So I created a place where I could unload and work through what I'm going through and what I'm feeling. But then it morphed into something else entirely. Don't get me wrong, if you follow my blog, you know I still do all that, but it's become about something more as well. I'm hoping that the time I've spent poring through information, and the things I'm experiencing, will help someone else going through the same things I am. Because we can't do this alone. We need to know we aren't alone, that someone out there knows and understands. And we need to be that source of information for them as well. If someone else can benefit from our hours of reading and sifting through library titles why shouldn't we share it? Believe me, I've loved finding that in others here as well. Its an invaluable tool.

So please. Don't be silent. Be aware and spread awareness so that you can benefit from someone else and be a help to others. Lets make research and progress in treating/curing autoimmune disease something that is as important to science as it is for us, and lets work at making it a thing of the past.

Uncertainty...the bully of Chronic and Invisible Illness

I have to apologize to Lana, I'm ridiculously behind in reading up on people's blogs, and unfortunately I'm back on July 29th of hers. So Sorry! I was just reading her post: "Being Chronically Ill Makes Me Question Myself" And all I can see is the parallel that holds true for all of us. Having doubt and uncertainty in ourselves and what we're able to accomplish is both personally devastating and creates roadblocks to what we're allowing ourselves to attempt to do in the future. Goals we've always had, and worked hard to meet, become less important, less achievable, as we look at ourselves and whats happening to our bodies and wonder if its even possible anymore.

Personally, I'm ashamed to admit, but I often see it as a "pass" for giving up, or not even trying. Or an excuse for why I didn't make it. It's hard to draw a line between what we physically can't do anymore, and what we can do, but have to do carefully. Having chronic/invisible illnesses not only affects our physical health, but our mental awareness of self, and our perception of what we're capable of. Quite frankly, It's not fair. But if we remain in the pity party, that I so often desperately want to throw for myself!, we're missing out on the beauty of what could be happening in our lives, and in the future. And what makes all of it worse, is the fact that others around us don't understand what we're going through. (See next post on Invisible Illness)

Our bully, uncertainty, tries to mess with our head and tell us we can't do it anymore. To quote Lana: "The truth is I know that am capable, but I don’t always know how able I am....when I am flaring I forget that I am able." I know I am right up there with her, and I'm sure many of you are as well. I can't begin to tell you how many times I've wanted to do something, but the words: if I weren't sick....runs through my mind as a disclaimer for why I can't. I'm afraid I won't succeed. I'm afraid adding one more thing to what I'm already doing will cause me to have a flareup. And I'm afraid to talk about it. I don't want others to know that I have other dreams, but I'm too afraid of what could happen to even try to accomplish them. I want to go back to school, I wish I'd never given up, that I'd pushed through to the end. That I hadn't picked a major based on things like: I can do this online, in my own time; or this degree will allow me to have a job with awesome benefits. I wish I didn't have to choose my job based on the insurance benefits. I wish needing insurance benefits didn't limit me in what I am able to do. I wish I had more time to volunteer. I wish I had more confidence in myself. I wish people understood.

But I also know, that if I let uncertainty win and take over all my decisions, that my life is not going to contain eveything I'd hoped for. I'll be stuck here, where I am, not going anywhere, or accomplishing anything new. I'm going to look back and be disappointed that I passed on so many opportunities. I'm going to see all those discarded dreams and wish I'd tried harder. I'm going to wonder if I would have been able to do it if I'd only tried. Thank you Lana, for reminding me that I am capable, and that I need to remind myself that I am able, and to try harder to shut out the little voice in my head telling me I can't do something. I'm going to re-evaluate what I want to do, and work on getting there. Because I know I can, I just have to work harder, and smarter to get there.

Doctor Drama!

Things have been seriously crazy in my life right now. So you may see a few updates in a row. Don't be alarmed, its just the flow of random thoughts and posts I had in my head for a while and waiting for the actual time to put them down on "paper". And instead of creating some super ridiculous rambling post, I'm gonna break it down for you. :)

So...back to Dr drama. I've never really liked my Primary Care Physician. She tends to overreact to labs/symptoms/situations when my other Dr's roll their eyes and tell me I'm being paranoid when I ask them about it. No...sorry, not me...just got a little freaked out about the phone calls and referrals to specialists that apparently are not necessary. Before you go into a lecture on why I stayed with her for so long, let me explain...

Now don't laugh...but I saw my pediatrician until I was 17... I know right? Stop laughing. She was awesome! She's actually the Dr I was seeing when I first started getting sick and having symptoms of RA. She narrowed down the field a bit and sent me on to my rheumatologist to figure things out. That's when she decided it was time for me to find a regular PCP; it also coincided with me leaving shortly for college. So I took the first name off the list of those she suggested that would agree to take me (first mistake...always check into it before making a blind leap into the unknown. Professional referrals are good, but patient opinions are occasionally more accurate.) I saw her a few times and discovered different things I didn't like about her, but as I was leaving soon for Ohio (I live in Pa) it didn't seem like switching Dr's again was top of my priority list...I wouldn't be seeing her much anyway right?

So...red flags in my details of Dr drama:

• When discussing a possible medication addition for cramping she tells me: "well you're already taking Peroxicam, which is what I prescribe for that all the time. Let me look, I'm not sure what the highest allowable dose is..." Not even kidding...right there, looked it up. Gotta give her props for admitting she didn't know, and yes I am aware there are hundreds of medications out there and she can't know them all by heart ( I worked in a pharmacy for 4 years, believe me I know...) But seriously? If you prescribe something ALL THE TIME wouldn't you think she'd know the maximum allowable dosage?? Does not instill a lot of confidence. 
• Whenever I got sick, had any kind of infection, flare up or other medical problems she would test for anything that could even remotely be related to my symptoms. I mean everything. I can't begin to tell you how many times I've been tested for mono. I've never had it. But I've been tested for it at least 10 times, probably more. I have a chronic inflammatory disease. One of the main complaints of RA sufferers is fatigue. Seriously...if I'm achy, sore and sleeping all the time...I'm having a flare up, I don't have mono. Every time my glucose level has been a little on the high side, she'd have the tests redone. I've had the fasting time delayed glucose test twice. Both came back negative. She tells me I have occasional hyperglycemia, my rheumatologist (dr mak) tells me its normal to be elevated while I'm sick/during a flare. 

So I try to avoid going to her if at all possible, and try to only go when unrelated sickness occurs when I'm not having a routine appt with dr mak (my rheumatologist) However, not even that works all the time. Because she's my PCP, all of my test results, etc automatically get sent to her. So I'd get phone calls because she didn't like the results of blood work that she didn't order, nor did the other physicians deem necessary to report or consider a problem. And she would then insist I come in to see her about them, get additional testing, or see a specialist. However, other than the fact that she tends to be an alarmist, and lets be honest, that's not a trait I want in my Dr, (how bout you?) there are the other "little" things that completely bug me about her office.

• For starters, her receptionist is extremely rude, second only to the billing lady at my dentists office who insists that she can't separate my dental billing/info from my moms (can we say HIPPA violation?). But that's another story... 
• Also, EVERY SINGLE TIME I've gone into see her I've had a wait time of no less than an hour and a half...and that's before even being taken back to the exam room to wait some more...And I'm not just talking those sick visits she would fit me in for, these are also routine scheduled appt's. It's ridiculous. And seriously, the last thing I want to do when I feel like absolute crap, have a fever of over 101, sinus infection, etc is sit in her waiting room for two hours just to have her tell me she doesn't know whats wrong, order a bunch of tests, and tell me she'd rather refer me than prescribe anything for me. Thanks, that was an awesome use for my time, glad I woke up, drug myself out of bed, into your cold, uncomfortable office for that...yes, thank you. 

So after the last flare-up landed me in the ER with rapid heart rate, pneumonia, chest pain and irregularities in kidney function on blood tests....and I got that phone call of overloaded concern...I asked my rhuematologist for a referral for a new PCP. He of course wanted to know why I was unhappy with my current physician, but promptly gave me information upon hearing my reasons. So the search was on for a new PCP, I'd finally had it. Check for my next post on how I actually made my decision...its an interesting story... :)

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.