Breaking the silence...

You may have noticed that I haven't been around much lately. I don't have some awesomely good excuse of being sick, out of the country or experiencing a flare as my excuse either. Sadly, I've just been lazy lately when it comes to most things computer related. The truth is, about a month ago, I was laid off from my job. Now, it wasn't completely unexpected, the closer we got to the end of our current grant, and having not yet heard from the decision makers of the grant we'd applied for, the more it became clear that lay-offs were imminent. However, I think most of us were expecting a miracle of epic proportions, sweeping in at the last second and saving the day! and all of our jobs... Needless to say, that did not in fact happen, and we were (nearly all) given notice that the company could no longer afford to employ us. (not sure if its mentioned anywhere in here, but I'd worked for a non-profit, in an office providing abstinence education, which President Obama has been advocating against, and actively reversing funding for these necessary programs)

You would think that this recent development would mean that I had ample time and opportunity to be wowing the online world with my many ideas and abundant wisdom...haha...sorry, not even I can keep from snickering here... :) Actually, I've been pretty absent where my computer is concerned. Aside from checking my email about once a day and occasionally browsing help wanted and job posting sites, I've not been on my computer that much. In fact, I just checked my google reader and there were over 70 posts lined up for me to catch up on...YIKES! I'm very sorry for neglecting to check up on all of you, and letting you know whats been going on with me lately.

The truth is, its been a little surreal. The first week and a half I was bored out of my mind. Then I gradually adjusted to my new schedule, or I should say, lack of schedule. You don't realize how much of your day is spent looking at a calendar, or computer until you're left without the need to do so and realize how rare it is for you to do such things otherwise. In fact, the first week of my unemployment, I paid two of my bills late, not because I didn't have the funds, but because I hadn't been checking my calendar hourly and seen that I had a payment due...oops! I spent a while catching up on old hobbies and all the episodes of my favorite shows that I'd missed because my limited time out of work was spent with other more important activities than watching tv. I've read quite a few books, all for fun! not because I had to! I'm going to be putting more health related books on my reading list and actually working to beef up my "helpful links/books" page. (promise!) And I'm going to work at getting back into the habit of posting on here for whoever is still coming back to check things out.

As far as the joblessness is concerned, I'm on four different temp agencies call lists, and have applications out to any company hiring for new office staff. I'm hopeful I'll hear something soon! In the meantime, I'm getting some projects done, and hope to really get this site turned around and being productive. I hope everyones doing well! I look forward to catching up on your posts and whats going on with you all! Check back later for more updates, and the things that have been on my mind lately!

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.

Solutions to the Double D (see below)

I've been complaining about my PCP for ages, but always figured, I hardly ever see her so its not that crucial to change it. And then I end up needing to see her, and I go through the whole: I need a new dr! thing again. So this last flare up, the one where she called some random rhuematologist, was when I decided to follow through with getting a new one.

Something you should know: (actually, I've probably said it in here somewhere) my mom's a nurse, so when it comes to my medical situations, she always has an opinion. Not just your random opinions that most parents have, because there's always some medical knowledge in said discussions. However, she's not consistent in sharing her opinion, most of the time she'll give it freely when I'm not looking for it, or when it goes against something my dr's and I decided. But when I'm actually LOOKING for her medical (or regular) opinion, she almost always tells me it's my decision and keeps her opinion to herself. (don't you love it when that happens??)

So I finally decide to go dr shopping, and my mom suddenly has no input on who I should see. She works with drs all the time and either knows a lot of them or at the very least knows of them, what they're like, etc... So I go trolling through random websites like healthgrades.com or ucomparehealthcare.com trying to find ratings, opinions or whatnot about local PCP's. I even went through the list reading their names out loud and asking about them...she only commented on the ones I thought had some promise and was going to look into..."oh, no...you don't want him/her..." sigh...

So I ask my rhuematologist (dr mak) for suggestions, and end up, not sure how really since I asked for suggestions, with a referral for a local dr who I guess is in the same network as dr mak. I go home and tell my mom "search over, going with dr...." and she responds quite emphatically: "oh...NOOOOO...you do NOT want HIM! He is the most arrogant, self-important, know it all, I've ever had to work with. You do not want to see him. He wouldn't be the right dr for your condition." Great feedback...little late in the game... Now what? I've got a referral and everything... No problem, I think...haven't called, just pretend it never happened and keep looking..." Two days later I get a phone call from his office asking me for more information for my file...apparently dr mak put everything through... great! (and by the way, she was extremely rude on the phone as well, before I even told her I'd reconsidered so I didn't feel too badly about this) So I inform her that I was still looking at my options and I would contact the office if I decided to go with them. I'm not positive, but I'm pretty sure she hung up on me....That door may be closed forever...oh, well...

So my mom starts joining the search and questioning the dr's she works with. Trying to find one she likes that she thinks will be the perfect fit for me. She comes home one day and this is basically our conversation: (comments in parentheses are my thoughts during said conversation)

Mom: I talked to one of the drs at work tonight and he agreed to take you on as a patient.

me: I'm sorry, what?

mom: he was at work, checking on a patient and I started talking to him about you. Well, when I first noticed him at the desk, he was talking to one of his partners, and I didn't want him to be around and volunteer for it, so I had to wait until he wasn't there anymore. But when he left I started talking to Dr. G. about your condition. I asked him if he knew anything about connective tissue disease (I interrupt)

me: I have mixed connective tissue disease, there's a difference...

mom: yeah, that is what I'd called it. (hmm...ok...) He said he didn't know a lot, but he could research it. I asked him if he only saw patients at healthsouth (rehab/therapy place my mom works at) or if he was taking on patients at his practice. He said he'd take you. There's just one thing....

me: (thinking back to earlier conversation about other drs she'd commented on, waiting for comments on personality, demeanor, etc) yeah?

mom: well, he's really, really good looking. (too shocked to speak....seriously? THIS is her hesitation point? what does it have to do with his being my dr?) Shana thinks he walks on water, says he's "dreamy". He's really good looking. (really starting to get uncomfortable with my mom, my MOM, going on and on about how amazingly good looking this guy is...awkward!...starting to wonder if there are ulterior motives...) Shana was all excited the other day, cause he touched her shoulder and told her good job....she came over and told Greg and me: He touched me!

me: why? is he single or something? how old is he?

mom: no, I don't think so...(I immediately feel better about "dr hottie", don't know about you, but I feel more comfortable with exams and other things with male dr's when they're married) he's probably in his 40's (ok, so she's not trying to set me up...why is his "good looking" such a big deal??)

me: so whats the big deal?

mom: I don't know, I just didn't know if it would make you uncomfortable...(really? why do I care...don't...no problem) I think he'd be a really good fit for you though. He's a great dr, really cares about his patients and goes beyond what he needs to, to treat his patients and be knowledgeable of their treatment and condition. He said to call his office and set it up.

me: ok...

So, long story short: I found a new PCP. Or rather, my mom found one for me...lol. In any case, I won't be back seeing my old one, and not going to miss her either. Now I just have the awkward conversation with them of switching and collecting my medical records...which I already did, not as bad as I'd thought it would be. And that experience made me even happier that I'd finally made the switch. I was going through my file, and its a serious mess. Really, did they shuffle it before giving it to me?? The records are totally not in order. It goes from 2007, to 09, to 02, to 04, back to 09, some 2010, some more 07, and on and on, nothing in order by date or occurrence, absolutely the biggest mess I've ever seen. No wonder she didn't know what I'm talking about half the time... Anyway, so ends my PCP dr dilemma.

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... :)

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. :)

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.

Cleveland Conclusions...

So yesterday was the conclusion of my “Cleveland Adventures”. After driving out there in the pouring rain for most of the trip, I had a rather uneventful appointment with my CC Dr. It wasn’t completely pointless as I’d feared, because she did explain MCTD some more so I have a better understanding of what it is and know a little better what to expect. Although, the very nature of MCTD is the fact that it has no specific features or symptoms of its own, but instead includes a combination of symptoms and manifestations of a variety of other connective tissue diseases: RA, Lupus, Scleroderma, and Polymyositis (some people also include Sjogrens). For me it’s mostly RA and Lupus.

We also discussed treatment options. However, because I had already discussed with her the fact that I can’t keep driving out there—I have to take an entire day off work, not to mention gas is ridiculously priced right now—she didn’t prescribe anything. She has a rule about seeing patients for follow-up when she prescribes medications so she is sending my dr. here in Erie her recommendations.

Basically, she’s convinced that the Plaquenil is my best option. Apparently, she’s not convinced that any of the problems I listed were actually connected to my Plaquenil use—she said I wasn’t on it long enough for me to be having any type of vision or other problems. It apparently doesn’t matter that a few days after I stopped taking it things got better and eventually seemed to go back to normal. I think she believes I was overreacting and being a touch paranoid…but whatever, I’m pretty sure I’m the best judge of what symptoms/problems I was actually experiencing. Anyway, she believes that if I try the brand name version of the medication, I should be able to tolerate it better and she believes it’s my best option to decrease flare-ups and put it into “remission”.

Right now, all of my clinical features are lupus related, so she doesn’t feel that going back on the Enbrel would be beneficial—as it’s an RA medication and not for the treatment of lupus. If the Plaquenil doesn’t work, she suggests I try Methotrexate (MTX) or Imuran. I’ve taken MTX before, was on it for a few years in fact, and while it worked for a while, I’m not exactly crazy about going back on it. MTX is a form of chemo, and while the doses an RA/lupus patient use are much lower doses, it still makes me nervous. I’d very much like to have kids one day, and even with the folic acid, there were still some serious hair loss issues. Thankfully, I’ve always had thick hair, so it wasn’t really that noticeable, but pulling out handfuls of hair in the shower is disheartening regardless of how little it shows or how much you have left. I don’t know much of anything about Imuran, so I guess I have some research to do, but she did say that its very similar to MTX, so who knows…

I guess my next step is to call my dr here in Erie…who I just saw two weeks ago…and see if he wants to see me sooner than my next scheduled appointment in June. It doesn’t seem that continuing with just my current course of treatment was something she recommends, as she suggested adding any of three other medications to help control and try to eliminate the recurring flare-ups that I’ve been having the last year or so. So, that’s basically all I know so far…I’ll keep you posted!

As a side note: if you noticed on the sidebar, I’ve listed a bunch of RA and Lupus related blogs that I like to follow. Two of my favorites would have to be The Single Gal’s Guide to Rheumatoid Arthritis by Sara Nash and A Chronic Dose: A Blog about Chronic Illness, Healthcare and Writing by Laurie Edwards. I’m currently reading through Laurie’s book Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties. It’s a great book and I highly recommend it. She has a very honest and relatable way of communicating what it is we’re going through as young adults facing, and living, with chronic illness. She’s also very open about her own personal life and shares a lot about her own experiences with dr’s, treatments and life in general following her own diagnosis. It’s definitely a must read!

"Normal" is a relative term, right?

So, it’s been a few weeks since I posted on my amazingly wonderful week. It's been awhile, because the fun didn't end there...it just got better... After sticking it out for the rest of the week...and hibernating for the weekend...I once again, crawled out of bed and dragged myself to work. By this time I'd had some serious sinus issues and was coughing on a regular basis...fun stuff right? Apparently, not fun enough.... By the end of the day, I was so miserable, I had already called my dr--two of them in fact, because one wanted the advice of the other before treating me. Yeah, it was awesome. I was advised to go to the ER--neither of them wanted to play around with my fun symptoms. At this point I should probably mention that not only was out of my mind tired, but at this point was also having trouble breathing--shortness of breath and it hurt to take a deep breath...or cough...or laugh... So, knowing that going to the ER was seriously going to cost me....I decide to go to Urgent Care. Who after collecting my copay, making me wait for over 20 min, and taking vitals, told me that they weren’t equipped to run lab tests and all they could do for me was take a chest x-ray--and I should really go to the ER. They were also concerned because my heart rate was really high--they checked it three different times and it was between 125 and 133 each time. Awesome--could they not have told me that before wasting my time and copay? Seriously...So off we go to the ER--I should mention that my younger brother was home from school on spring break and was being amazing and driving me around--because he's thoughtful like that. And because my mom had to work, and she didn’t want me driving myself--not sure why, but whatever. I did have to pick him up from the ER once at 1am after he "broke his butt" pulling some stunt at the Peak on his snow board...so I guess we're even. :)

Anyway, after the initial check in, we settle in the waiting room for what appears to be a good wait. An hour later they call me back--not to be seen, because they weren't to me yet, but because my heart rate was so high they wanted to be sure it hadn’t gotten worse while I was out there waiting, apparently, that would get you priority. It hadn't gone up (or down either) so back to the waiting room I go...for another hour and a half. When I finally get back there, and get to change into the awesome hospital gown...seriously, they can't come up with something that will close in the back?...the nurse comes in and takes all my vitals again. After a while the dr comes back and the fun begins. I'm going through my last week and such and explaining that I have RA and MCTD--and he actually seemed to know what that is! And listing the different medications I was on...and explaining that I'd discontinued the Plaquenil that Saturday, and why. ( I was having some blurry vision issues and some serious pressure around the eyes, putting in my contacts was even painful--not to mention the nausea) They get the chest x-ray from urgent care, and he tells me that he's not sure if they'll run any blood work or not, he hadn't yet decided, but he wanted me to have an EKG because of the heart rate issue. After that the nurse comes back to put in an IV, they were going to give me a CAT scan, with the reactive dye to check for blood clots in my lungs. Before they do this though, they need to be absolutely positive I'm not pregnant....Apparently not everyone believes its possible for a 26 year old to be a virgin...whatever... So they send me down the hall to the bathroom (in the amazing flowy nonclosing hospital gown) to pee in a cup. If having that stupid gown, three sizes too big and all over the place was not bad enough, they still had lines from the vitals machine that they didn’t detach but unplugged hanging down as well as my IV line...so needless to say that was an adventure... So after they had confirmed that I had not immaculately conceived, I was detached again and wheeled around to x-ray for the CAT scan. Once back in my room a Phlebotomist comes back to draw some blood. After a while (by this point the IV bag was pretty much empty, so it had been awhile...) the dr came back to tell me that my CAT scan was clear and I didn't have any clots, and they didn’t notice anything on the chest x-ray, so they think I just have a serious sinus infection. He also told me that my blood work showed some irregularities in my kidney function that was most likely caused by my connective tissue disorder. He wrote me a script for a Z-pack, gave me orders for more blood work to do in two days to check my kidneys again, and told me to follow up with both my PCP and my Rheumatologist.

I wasn’t much phased by this new development, and after getting home at 2am and finally getting to bed, I actually got up in the am to drop off my rx on the way to work...yup, I still went...Another miserable day at the office...to which I eventually gave up and went home around 2:30 when I seriously had depleted my last drop of energy. I also told my boss that I would not be in the next day either. After staying home all day Wednesday...bored out of my mind I might add...I went back to work Thursday. All in all, a crazy and tiring week. Now, two weeks later, I'm feeling back to normal--or at least, my version of normal. Tomorrow is my follow-up appointment at the Cleveland Clinic. I'm worried that they will try to put me on another medication and then insist on seeing me again for another follow-up. Its insane having to take an entire day off to drive out there (it takes 2 hours) not to mention the gas money...not to mention the CC itself is ridiculously expensive. I managed to hit my $750 deductible by Feb 4th...seriously...that’s insane...35 days and I'd already surpassed it...So, yeah...while I may only have my copay to worry about since I've already satisfied my deductible...I'd still rather not waste my time and my gas money driving all over creation when I have a perfectly fine dr right here in Erie. Have I mentioned I'm using my last sick day to go out there tomorrow? Yeah, so I'd really rather not have to go again. So here's hoping...

A fight I can't win?

For the last three days, I've felt like complete crap. The temps haven't gone above 101.8 but the lowest they've gotten--even with taking those horse pills of IBU the dr gave me--is 99.8. I hurt everywhere. I'm exhausted. And I just want to cry. I don't know how long it will last. I don't know how bad it will get. I don't even know much about the silly disease eating away at me. Little by little, it’s as though the hope seems to fade. Like I'll never have a normal life. A husband that chose me knowing what I have. Having kids and being able to play with them and enjoy their childhood. My family is awesome. They're supportive. They love me. But they don't understand. Granted, that hypothetical husband isn't going to understand it much better. It's just so hard going through the day to day, knowing things can only get worse. That it will get worse. Unless some brilliant Dr. or researcher comes up with some miracle cure of the unknown, things will only decline with time. Unless God decides to heal me, I'm looking at being stuck with this for the rest of my life. I know He can do it. Nothing is impossible with God. I know that. I believe that. I just know and understand that he doesn’t have to. This is the life he gave me. I don't understand why, I don't know how he will choose to use it. But I know it’s a part of his plan for my life. Knowing that, doesn’t make it any easier.

I try to seem normal. I try not to complain. I try not to whine. But sometimes I just feel so horrible I want to do nothing but sleep and wait for it to be over. For the last three days, I've gotten up and gone to work. I've been popping IBU on cue every four hours. I've been checking my temp--when no one is looking--and at the end of the day, I go home and crash. I crank up the electric blanket watch some TV for a couple of hours--till that last dose of IBU--and go to bed. Usually before 9:00. I go to sleep with a temp, I wake up with a temp. I go through my day, trying not to overdo it, knowing it’s too late and trying to act as normal as possible. I made a couple random comments about not feeling that well this morning--as two good friends and coworkers helped me put together my new desk. I got a sub for nursery Wednesday night. My mom hasn't said much about the extra sleep, it never really seems to feel that she understands how bad it is. And I know that’s my fault. I don't talk about it until I can't handle it anymore. When all I can do is go to bed and sleep. It seems like it came out of nowhere. Sometimes it does. Unless you have MCTD or something ridiculously similar--you can't understand what its like. It’s not your grandma's arthritis pain. It’s not like the flu. It slowly sucks everything out of you, and feels like it'll never stop.
I don't talk about it for a variety of reasons. People not being able to understand it is only one of them. I don't want to be a statistic--it’s a rather low number, being it's a rare condition--but I don't want to be a number. I don't want to be remembered as the sick girl. I don't want people's pity. I don't want to admit defeat. I won't let myself give up. I won't let this disease take my future--whatever it may hold. I won't let it hold me back from what God has for me. What I know can happen. I'm fighting--everyday--to feel like I belong, like I fit in. Like I'm normal. I'm fighting back. I am a person with a personality that, while shaped by my disease, is independent of it. I have goals and dreams and hope that I'm not ready--and very unwilling--to let go of. I won't let the disease rob me of a sense of life, feeling of fulfillment, or let it stop me from succeeding. So, I get up everyday, and I fight back. It may be a fight I never win, but I still try. Because if you give up the fight, you're letting go of hope. And I refuse to believe that this is it. God has more in store for my life than this. He's promised never to give us more than we can bear. It’s not something we can do on our own. It takes a strength that only he can provide, sometimes he carries us along. But he hasn’t forgotten me. He's there--I know it, I believe it, I can feel it. So I'm trudging along, knowing it will get better. Hoping for tomorrow. Waiting for His plan, and my own happy ending whatever it may hold.

Do I look like I have Medicare?

So, I get a letter in the mail today from the Cleveland Clinic. It is to inform me that there are some additional charges that have been reflected on my account. Apparently because the Clinic is a hospital, no matter which office you go to or if it’s even in the actual CC hospital or outlying office practice--they can, and do charge the outpatient hospital fees/charges. The letter continues to inform me that Medicare covers most of the costs related to such charges, so there should be no worry about coverage. However, should you not have Medicare; you should contact your insurance company to determine the coverage of any additional charges. Yes, thank you....I'm 26--does it look like I'm going to be cashing in on some Medicare benefits? Why was it necessary to prattle on for two long paragraphs about the benefits and coverage when it is clearly not something that applies to me? Sigh...I hate form mail....And I'm a little afraid to find out what the charges are going to amount to. Cause these are on top of the typical dr visit copay/charges....and my hospital/ER copay is $75, unless admitted....so I'm a little nervous to see what the damage will be....That and my deductable has started over...

Dating disasters of the immunologically challenged...

It's taken me a while to be able to write this post. I've been mulling over the thought of putting it out there for a while, yet something always kept holding me back. I don't know if its a fear of putting it out there for all to see, or just not wanting to admit defeat out loud, but I know that I can't move forward without putting the past behind. It just occured to me (after seeing the million and one posts on facebook) that tomorrow (or at this point today) is Valentine's day. The irony of that is not lost on me, but after taking the time to gather my thoughts and getting ready to put it on "paper", I'm not going to let that stop me. It really has nothing to do with the supposed holiday, and I use that term loosely. I think my one friend put it best when she was telling us what she'd told her husband back when they were dating. She'd warned him never to buy her flowers or chocolates or anything else on Valentines day. She didnt want his affection to be expressed soley because hallmark was telling him he should. To this day, she will randomly get little gifts throughout their marriage, just because he loves her and wants to show her. So please, don't misconstrue my lack of enthusiasm for Valentine's Day as the bitter musings of a single person. That is not my intent. There's nothing wrong with it, I'm not bitter...not about the holiday anyway... :) But anyway, I'm getting off topic. Back to the reason I started this post.

Just last weekend was the first time I was able to even voice these thoughts out loud. Driving along with one of my best friends, Elizabeth, I shared with her something I'd never been able to admit out loud. I'd been secretly emailing and google chatting with someone I'd met on a Christian dating service. I know, I know...online dating, really? That's what you're thinking...I've thought it too, millions of times, especially during the course of testing it out. I struggle with the concept, wondering if its taking things out of God's hands and his timing, or if its just another tool He would use to help me find the man that he has for me. Its still an ongoing debate in my mind, and one I'm sure I'll never quite figure out. Needless to say, I've taken the time, on a couple occassions, to see what the hype was all about. Just a few test runs on the trial basis, nothing too serious, but I've met a few people along the way. One man in particular, the one mentioned above, had especially caught my attention. He was so sweet and unassuming when we first began talking, apologizing for seemingly pushing for my name, being understanding about the fact that I was obviously hesitant to give that kind of identifying information so soon. The very fact that he was understanding about the whole thing led me to give him an answer. Through the course of our communication, I'd come to anticipate and enjoy our "talks". We'd shared a lot and I was really coming to care about him more than I'd thought I would. The fact that my parents are divorced, and that my father was abusive didn't scare him away like I'd thought it might. He had already shared that his parents were divorced, which led to the conversation, but instead of being uncomfortable with the news of my past, he told me he was sorry I'd had that experience, and that he couldn't imagine what it had been like for me. His acceptance of this, and our continued conversations continued to grow our slowly moving relationship. I was fine with the speed, I was still a little apprehensive with the whole online aspect of it all, and the fact that I'd never even met him.

We talked for exactly eight weeks, and that is when I'd begun seeing symptoms of my coming flare. Its when I told him that I had RA (which at that point was what I thought I had). It's also the last time I ever heard from him. There was no response to that email, no more conversations on google talk. I'd tried to start one once, only to have him log off. I'd sent three emails after the initial one telling him of my condition. One informing him of how my dr's appointment had gone, telling him I knew it could be overwhelming and if he had questions to feel free to ask, I even gave him my phone number. Another to vent my frustration at his obvious avoidance of talking to me at all, and then a third apologizing for my outburst. Still, I never heard from him again. It's been two and a half weeks, but it doesn't make the rejection any less painful to handle. It's sadly not the first time its happened, and I'm sure it won't be the last. The fact that I have to live with a constant health problem is a lot for me to deal with sometimes, much less ask someone else to accept and live with as well. I understand that, I've accepted it, but it doesn't make facing it any easier. There have only been a few guys that I've let get close enough to find out. One of the hardest things about dating for me is knowing the right time to tell someone that I have a chronic illness. I dont tell a lot of people, because it always seems to change things. For some reason, people start to view me differently, Theres a sudden limitation to their way of thinking in what I'm capable of and what I can do. I hate that feeling. I hate seeing people pity me, or think my life is basically over. And I'm really afraid that I'll never find someone who will be able to accept that part of me.

Every relationship I've had, while they didnt go far, ended abruptly when they found out I have RA. One guy in particular, a dreadful blind date scenario, had a similar ending that certain members of my family still attribute to the fact that they thought I wasn't physically attracted to him. Granted, I wasn't in awe, but the very fact that they felt I was that shallow still hurts. Not enough however, to reveal the true fact of why I never heard from him again. Even tho he was supposed to take me out to dinner on my birthday...thats right. I waited for him for an hour and a half with no call and no appearance, before allowing my mom to talk me into going out with her. Ah, yes, another fond memory... (if you haven't caught on by now, I'm a seriously sarcastic person)

I'm 26, and I've never had a serious relationship, not really. There have been three guys, all of whom couldn't get past the fact that I'd told them I had RA. Most people don't even know I've dated at all. The failure rate isn't exactly something I'd like to broadcast...Anyway, through all of my experiences, I find it hard to be myself around the single guys I come in contact with. Friendships with guys who are dating someone else are always easier to handle--no threat at all in that. I've had people think I was flirting when I was just joking around with someone, so I'm constantly overanalysing myself and interactions. I find myself closing down when around said single guys, either because I'm not interested and don't want to encourage anything, or because I find myself interested in someone and afraid it will end the same way the rest of them have. It's a vicious cycle--I know it, but I also don't know how to stop it. Its an overwhelming flight response that automatically kicks in. I know I have to let go of all the pain in my past relationships before I'm able to move forward with anything else in the future. Thats the reason for this post. It's my first step in trying to let go and move on. I've always found writing down my thoughts and feelings to be cathartic. Its one of the reasons I started this blog in the first place. That, and knowing there are many others like me, wandering around the bloging world discouraged and looking for someone who understands what they're going through.

I know I've spent quite a lot of space rehashing and venting my frustrations, but be assured I haven't forgotten through it all that God is in control. It may sound trite to some, but the fact brings me comfort. It's what keeps me going when all I want to do is just sit down and cry or hibernate until it all goes away. It's what gives me hope. One of my favorite verses in the Bible is Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." It's my life verse in fact. I cling to the knowledge that he wants what is best for me, and has a lot of good in store for my life. I just have to trust in him and let myself accept it when it comes. I have to stop running and give people a chance. Because the future he has planned for me, is not something I wish to miss out on because I was too afraid. Because I know that when I'm there it will surpass my expectations and truly be amazing. Because thats what his plan for me holds.

Exhausted, but sleep deprived

Apparently exhausted does not mean sleep will come. I've spent the last 5 hours trying to fall asleep, but as you can tell, I've had no success. Thoughts and fears are swirling around in my mind, and I can barely make sense of it all. Although to be honest, it's really more fear than thought thats keeping my mind going. I know very little about this new thing thats entered my life. Or perhaps more accurately, the new name of what I've been living with for the last nine years. Mixed Connective Tissue Disease (MCTD). That is my Cleveland Clinic (CC) Dr's final diagnosis. She told me it is a lupus like condition, that can change into full out lupus over time, but also manifests different symptoms of other various autoimmune diseases. She also told me that I could find information about it online. I'm finding out however that there is precious little out there by way of explanation. At least, not by legitimate, reliable sources. And so the definition of what I have is still very vague and overwhelming. And more than a little scary.

The past few weeks have been anything but normal, but then "normal" for me has long since passed that of the common definition know by everyone else. In my quest of finding my own new normal, the process of relinquishing claim to the RA name has been a bumpy ride. It would be easier if I knew my new traveling companion, but as I stated above, little has been found to leave me confident in my understanding of my new diagnosis. To top all of that off, my little flare has been continuing, though thankfully it is a much sedated version of my typical variety. You can't actually tell by looking at me that anything is wrong this time around--that is, unless I'm more tired than I thought. :) Besides the continued fatigue and relentless trouble sleeping, I've been having flashes of heat radiating from various joints combined with the dull ache that often comes with it. The swelling in my hands and feet have been slightly worse than normal, and sitting or standing in one position for too long tends to get pretty uncomfortable. I started my new medication, Plaquinel, two days ago. I've been warned that it takes a while to kick in and begin doing its job, but I'm hoping it doesn't take the entire 6 weeks she gave me before my new follow up appointment. Stress has always made my condition worse, something I didn't really understand, much less believe, until I left my last job and all its craziness behind. However, in light of current circumstances, remaining stress-free or even limiting stress is a bit of a stretch at the moment. I'm really having trouble coming to grips with my new condition and finding peace of mind through it all.

With all of these things warring for my attention, its no wonder I'm having trouble shutting down my thoughts and getting some sleep. Knowing I can't achieve peace on my own, I finally sought the comfort I know can only come from prayer--a peace so complete and beyond understanding that it can only be found in my Savior. Tears running down my face, I began to pray. Not knowing where to start or what to say, I just poured out my heart to my very best friend. And I let go of it all. I may not know exactly whats going on or where my life is headed. I don't understand why. What I do know is that I'm not alone. I have peace in knowing that my heavenly father loves me and wants whats best for me. It may not look like it, but everything in my life serves some kind of purpose. I may never understand what that is, it may not be evident until I stand before Him in heaven. But I do know that somehow, it will be used for His glory. I heard Steve Saint, son of missionary Nate Saint speak at a music festival a few years ago. Something that he'd learned and shared with us has stayed with me till this day. After telling his story, and that of his father's, he introduces us to his "uncle"--the very man who had killed his father. He explains how they'd met when his mother decided to take him back to the ministry that her husband and others had died for, and how their curiousity in how these women could return after the loss of their husbands, led him and others to Salvation in Christ. His next statement is something that will forever stay with me. "God never allows a single hurt, that cannot be used to further the cause of Christ." No. I don't know the "why" or even when, but I do know that he will use it somehow. I just hope I'm not too caught up in myself and what I'm going through to miss the opportunity when it comes. So I take peace now in that. In knowing that HE knows whats going on. And HE has a plan and a purpose for my life. However confusing and unpredictible it may seem, I'm on the course that He's set for me. I may not know what speed bumps and potholes are ahead, and I'm not always going in the direction I've planned, but I know that the end destination will be worth the few detours along the way.

The Cleveland Inquisition and Redirection

I've spent the last three hours sitting here staring at my computer. I'm not sure where to start, how to start, what to say. Its been an interesting day. The drive was uneventful, I found the Dr's office with no problems, was seen quickly, and was seen by a great doctor. We sat down and basically went back to the very beginning. It's been nine years since I got sick and was diagnosed with RA. I had to really think about everything thats happened in the meantime. The medications (there've been many!), the tests, xrays, etc, all the fun stuff that makes up a persons medical history. Every detail I could remember of the last three flare ups, and what happened this last time. An hour and twenty minutes later, after rehashing all I could remember/think of that was important, or could in any way be relavent, I was sent downstairs for a barrage of lab tests. Armed with my new dr's business card, information about a medication she may possibly be placing me on, and an appointment for two weeks from now, I was sent on my way.

Needless to say, the appointment left me with more questions. Not ready to give me a diffinitive diagnosis on what she believes is "wrong" with me, until the tests are back and we sit down for part two of my "cleveland adventure". She did however leave me with an impression of what she believes to be the problem. And after spending three hours at the library immediately upon returning to Erie, I have a feeling she's probably right.

It appears that this blog, which I spent so much time working on yesterday, is a bit of a misnomer. There is the very real possibility that I do NOT have RA, and in fact actually have Lupus and Sjogrens. Lucky me, I get to trade one in for two! I was talking to my sil earlier and she asked me if I was stressed. To be honest, I'm not quite sure what to feel. I've spent the last nine years believing I've had something else. I did my research, I knew the symptoms, the treatments, the basic progression of the disease, etc. I'd accepted it. What it was, what it was doing to my body, what it had the potential to do in the future. I'd spent nine years treating it, trying to slow it down, believing we knew what the problem was and that we had it under control. And now...? I'm back to the beginning, learning about something new, going through the whole process all over again. Not only am I having to deal with the fact that I have new things to learn, but the fact that its been undiagnosed and mistreated for the last nine years. Nearly a decade of a disease with systematic problems and complications, ranging from kidneys, lungs, etc going untreated. What is that going to mean? The doctor was very kind and answered my questions, whats the difference between lupus and RA, what IS  Sjogrens, I really didnt know what to ask, what to think.

I never thought I'd be sitting down and looking at disease "options" and trying to decide which one's looked better. But there I was in the library, pouring over the Sourcebook of Immunological diseases and disorders soaking in all I could find about Lupus and Sjogrens. And finding that what I was reading lined up rather well to what I'd been experiencing. What am I feeling? I'm scared and hopeful at the same time. Scared that they're right and I have complications from not having the right treatment--Kidney problems/failure is no laughing matter--of not knowing what to expect and whats going to happen. Hopeful that it will mean we're able to better control and possibly "downsize" or eliminate the frequency and severity of my flare ups. Angry that its taken this long to figure it all out. Angry at my dr's for not finding it, myself for not going out there for a second opinion sooner, my mom for talking me out of going every time. Overwealmed with all the new information and possibilities. Tired of it all. Tired of worrying, wondering and trying to figure it all out. And just plain tired.

Adventures in Cleveland

Tomorrow, or rather today...I have an appointment with a Rheumatologist at the Cleveland Clinic. I'm not really sure what they're hoping to find...the only thing they could tell me about my recent labs were that they were consistant with inflamation--thank you captain obvious! I have RA, when do my labs NOT show inflamation? Anyway, the point of my rather spur of the moment appointment, is to get a second opinion. Last weekend, while on vacation no less...I know how to time it right? I got this nasty rash. I know, you're in for some awesome details to my wonderful life for the past week or so... It started out with just a little bit of a reaction on my arms, kinda near my wrists, and continued to spread and increase in intensity for the remainder of the weekend. It didnt even itch right away, I was just unfortunately aware that a flare up was basically inevitably coming. Yay me... By Saturday, we'd made a trip to Target for Benedryl. The fact that it didn't immediately progress into a typical (for me) flare up made me hopeful--maybe it was just an allergic reaction to the laundry detergent my brother's family used. Sadly, this appeared to not be the case. By Tuesday, I was so uncomfortable I marched myself down to urgent care after my doctor refused to prescribe Prednisone without seeing me first. After two days on high doses of Prednisone, and with the rash continueing to spread--by this point it was everywhere except my face, I got my Rhuematologist to fit me into their schedule for Thursday. They prescribed Atarax and IBProphin, gave me some paperwork for lab work, and told me to make an appointment with my allergist who I then saw Friday. By this point, I'm on so many medications, I can't even keep them straight, and its still a complete mystery. My allergist, even had the "new guy" come in and take a look. They both agreed that they'd never seen anything like it. Awesome...and completely unhelpful, thank you. So, Tuesday rolls around and my dr's office calls to ask me how things are going...and to basically tell me that they can't figure what else it can be other than a rhuematoid flare up, but they'd never seen one such as mine. I apparently have a knack for having the weirdest flare up symptoms. While a rash is apparently very common, it had only been the second time I'd had one, so when it happened last time, I wasnt aware it was RA related and went to my pcp. This time, I skipped that and went straight to my rhuematologist. This would have been my fourth flare up, I'm not really counting it, because I didnt really have any arthritis type symptoms/problems. My last three, have been one-two week long ordeals that include me spending most of that time in bed, with astronomical temperatures. I'm not kidding--I average around 104. Last time, my temp held out for four days without going down. That really freaked them out. Dr's take serious issue when you reach temps high enough to cause brain damage...Anyway, all this to say, my flare ups are never normal, and they're concerned with that and the fact that they have been pretty frequent lately...I've basically had one every 6-9 months for the last two years. They want a second opinion...to be sure that it is in fact just my RA and I don't have something else going on. So its off to Cleveland I go....later that is. I'll post more when I know more.