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.