Dating someone with chronic illness

Someone recently came upon my blog after googling "dating someone with ra" and it got me to thinking about how things may have ended so much differently in Dating Disasters if something were available to reference for someone on the other side of the whole issue. I think that we often forget how hard it is for those who love us to understand what we're really going through. There's a definite lack of communication, and while that seems like an easy fix, there's a lot of fear and indecision when it comes to discussing your health with friends and family, not to mention the added stress it all adds when you consider having those same conversations with someone you really like.

Dating can be difficult enough as it is, but when you add into the mix something like health problems, especially for someone in their 20's and 30's, then you have a whole lot of room for problems entering the mix. You like them, you want them to like you, and you'd like to be able to think about the future. When you have chronic illness in your life, the future contains many more unknowns than the average person. Sure health problems can surface in anyones future, but those with a chronic illness have a name already given to that possibility and the added stress of knowing what those possible complications could be. We've been handed a roadmap of symptoms, risk factors, complications and side effects to look out for. It's hard enough for us to think about encountering them. Explaining all of that to someone we hope to explore the possibility of a future with? Well, that's just plain scary. We've had time to think about it all, to wonder and to research, and get used to the idea of what we're experiencing and where that may lead. Most of us have come to grips with the idea and are doing our best to stay positive and be "normal".

Personally, I don't see my disease as an issue so much as a challenge. Sadly, not everyone sees it that way. You'll encounter people who don't understand, and who can't get past the idea of the challenges you may face in your health to the blessings you could share in a relationship. I'm not saying I have the answers. I'm positive I don't. It won't be easy, but I think things could be easier than we often make it out to be. And sometimes misguided anger and frustration can build and add to the challenges and discoveries that come with any relationship, making it seem harder than it needs to be. Making you wonder if the extra effort and turmoil is worth it.

I can tell you one thing I know from experience however. I can't tell you if working through it and trying to work past it is worth it or not, because I never got the chance to find out. Things ended with Brian before I was able to see how good it could have been. Before either of us had had a chance to find out if a future was something we wanted to pursue. And that is what hurts the most. The not knowing what may have happened if we hadn't given up. Wondering, three years later, where I may be today if things had gone differently then. It was early in the relationship. We hadn't even met in person yet. I'd never heard his voice. Our only communication had been our daily, and sometimes more than once a day conversations on the computer. And yet seeing he was there, and having those conversations made me happy. It seemed like we could talk for hours. I'd shared more with him about myself and my past than I had with even my best friend. But I'd not yet told him I was sick. I didn't know how he'd react and that scared me. But mostly because I don't feel like I'm sick until a flare hits. I don't think of myself as a "sick" person, as though my disease defines me. Because it doesn't. Its something that I have to live with, but I can basically ignore its existence and not think about it as something that matters. To me its just another reality to what I live with everyday. I've gotten used to the pain, so much so that I don't even notice it much anymore until it gets better and I notice its absence, or it gets worse and I feel like crap.

I forget sometimes that I've had roughly 12 years to get used to the idea. 12 years of research and discoveries, 12 years of fighting back the fear of what may happen and getting used to the idea that I'll never know how bad it will get until it happens. My biggest regret? I didn't give him the time he needed to process the information. I didn't wait to see how he'd react and what he'd have to say. I took his silence as rejection, and I reacted. Admittedly not well. And I really wish I'd waited longer and seen if he'd have responded how I hoped he would. Instead I pushed. I let the fear of what I thought was happening override my good sense and made that fear a reality. And while knowing it was over was painful, what hurt even more was not knowing why. Wondering if it was my own poor judgement and how I handled things, or the fact that he couldn't come to grips with it all. There was no closure, it was just over. And I've let that experience color every relationship I've had since. Or more to the point, I've let it close me off from ever getting that close to someone again. I've been too afraid that I'd again feel the rejection from someone I was starting to care about over something I had absolutely no control over. I've been too afraid to feel like that again that I haven't let myself trust someone enough to be able to tell me it didn't matter. And I'm beginning to wonder if its all been worth it. Because the pain of rejection can't be worse than the pain of feeling so alone. Of feeling like you'll never find someone who will be able to love you enough that everything else doesn't matter.

So please, take my advice. Don't push away what you desperately wish you could hold onto. Give them the time they need to think about it all and a chance to show you that being with you is more important that not knowing how your health may impact your relationship and your future. Because if we're honest, those uncertainties are there for any relationship, whether we know we're sick now or not. Sickness holds to no ones timetable, it doesn't care about our goals or ambitions, it doesn't wait for us to have time to deal with it or when things in life calm down or are less stressful. In fact, stress often makes things worse and can trigger a flare up. It can strike without notice and it can build gradually or hit you so hard you didn't see it coming.

The point is this. We all handle uncertainty in our own way. We've all been there. You get your diagnosis and type it into that search engine and wait for the "answers" you crave. But then, we also all know that only a small margin of the information we'll uncover is fact. The rest is just opinion and speculation. Oftentimes from those who don't even have a first person view or experience with what they're discussing. Add to that the fact that we've had the (hopefully) added blessing of dr appointments and referrals that have given us a way to get good and real information and a chance to ask our questions and have them answered. You can see where your significant other, having none of those advantages is left only with the answers on his screen.

Imagine for a moment how scary it would be to be on the other side of things. You're seeing someone you're starting to care about, thinking you know all the important things and that the other details will fall in place as you go. You're learning more about each other with every passing conversation and you're really liking where things are going. You're starting to think about the future. And suddenly that picture you've been building in your mind gets shattered. You've just been given information you never expected to hear. Your seemingly healthy SO just informed you that he/she has a condition for which there is no cure, is only sometimes managed well, and can often change direction without notice or warning. It could mean a few days in bed or a week in the hospital. Your browser window opens up a slew of nightmare scenarios and you don't know what to think. You don't know what to believe. You don't know how to react. What do you do? Having already been on our own side of it all, I'm sure you join me in thinking you'd give a resounding "we'll get through this together, it doesn't matter. I still care." But if we didn't have our own health problems in our past to color how we think we'd react, do we really know what we'd say? Is it fair to ask someone else to be able to handle the shock of first hearing that you have a condition, labeled by many a disease...(oh, how I hate that word...) and react to it well?

Remember your own reaction to finally having your condition given a name? For me, its happened twice. I was misdiagnosed 12 years ago and only given a proper diagnosis three years ago. I had nine years to get used to one disease only to have that knowledge and reality abruptly and rudely changed without warning. Replaced instead with something even more unknown and a future even more uncertain. I was angry. Upset that what I thought was real was not, and that I'd been treated for so long for something I didn't even have. I was disgusted with the idea that there was very little out there to discover on my new diagnosis. Bitter about the fact that I had new things to fear, new uncertainties that could creep up and sideline me without warning. I saw the limited information as a challenge for a while, searching nonstop for information that may give me a glimpse at what I may be facing. Fear at realizing there was little out there because there was little to know. But for us, that name, however restricting and scary, was also a relief. Because we'd known for some time that something was wrong, we just didn't know what. Now we had something to fight. Something to blame. An answer, however limited, for what we've been experiencing.

Now imagine hearing about your SO's diagnosis without all of that preceding it all. No warnings, no inkling that something may be wrong. For all you know you're dating a perfectly healthy individual, because that is what we portray to the world. We show no pain, no fear, no hint that something may not be right. We ignore the pain and go on with our lives, because we know its not going away, and complaining about it isn't going to make it better. They're given this bombshell of information and are faced with us, waiting for a reaction. Taught by experience to fear the worst and expect very little from those we tell. So here is my advice. Give them space and give them time. Let them know that you understand that its a lot to take in and a lot to accept. Let them know that you are there to answer any and all questions they have. Listen to what they actually have to say and try not to read too much between the silence and the questions. Let them process what you've told them and what they will discover on their own. And above all, trust them to be the kind of person you've thought them to be all along. Do not assume to know what they are thinking or try to interpret their silence or try to figure out what their questions may mean. Take it all as it comes and be patient. Let them tell/show you how they feel.

As for those of you who are faced with the information that someone you care about is "sick", here is my advice for you:

• We're just as scared about how you will react as you are about what it all means. Please don't leave us hanging. Let us know that you need time to process it all and to think about it. If you know right away that its not something you want to have to live with, just tell us. We're adults and we can handle it, don't just drop off the planet and wait for us to get the hint - tell us the truth. 

• Ask questions. We know you're going to have a million of them. Don't be afraid to ask about what you've read or what you've been told. Understand that a lot of what you're going to find on the internet is going to be uncommon or untrue. For many of us, our conditions may manifest differently case to case. Meaning that what may be true for one person with MCTD may be completely off base for me. Its considered an "overlap" disease meaning it may exhibit symptoms and disease activity from more than one disease, and as such may be different person to person. Don't be afraid to tell us that you don't understand something and let us know if you want to know more. We'll be glad to try to explain. 

• Listen. We know that what we're telling you is overwhelming and often potentially alarming. If our answers to your questions only leave you with more questions, don't be afraid to tell us if you don't understand what we told you or to ask followup questions. We've become semi-adept at doctor speak and the lingo of the waiting room. We forget sometimes that others do not have that same understanding and can continue on not realizing that you got lost back in the conversation somewhere when some medical term or another left you wondering what just happened. We really do realize that degenerative, immunosuppressant, and a whole host of other terminology is not in commonly used in others' vocabulary. Stop us when we fall into our standard "text" of an explanation and we venture into territory you don't recognize. Understand that we've explained our condition so many times that we do have a rote answer to most anything. If it sounds rehearsed, its because we've answered it before and we probably are giving an answer we've nailed down and use everytime we're asked. Don't be offended. Show us that you really do care about the answer and really want to know. That you aren't just asking because you think you have to. We'll know if you're being sincere and we'll respond to that. Let us know if you feel like you're not being heard and if you think we're not taking your questions seriously.  

• Pay attention to what we're telling you and also to what we may not be saying. Some things that are happening may not seem like a big deal to us, because we're used to it. We don't always realize that we need to explain why or how something is hard for us to do, and its often embarrassing to admit to our own limitations. Know that we're just as unsure about what will happen and how this will affect the future as you are.

• Be honest. Tell us how you're feeling. We're not mind readers, we don't know what you're thinking and what you're afraid of. We have our own insecurities and fears where our conditions are concerned, we know that you are going to have some of your own. We can't help you to understand what we're going through if we don't know what it is you aren't sure of or want to know more about. We want to be there for you emotionally as much as you want to be strong for us. Don't let how you think your emotions will make us feel keep you from expressing them. Don't close yourself off from us when we're most unsure of how you will react to everything we are telling you. 

• Be there. Sometimes just your presence is enough to make us feel better. Just knowing that you care and wish you could do something to make us feel better is enough. We know there isn't much you can do, but knowing that you care is a great help in and of itself. Being sick is no fun. Feeling like you're going through it alone is terrifying. Be the shoulder we can cry on, the confidant we can share our fears and insecurities with. Know that we're not feeling well and will probably ramble and often not make sense. We're likely to get angry, with our situation, how we feel, and the fact that there is little relief in the midst of a really bad flare up.  Sometimes you just have to wait for it to be over. Its frustrating and if we seem to take it out on you, please don't take it personally. Please forgive any and all emotional outbursts, bouts of complaining and whining when sick. Don't let us chase you away, because being there really does mean a lot. Especially when we know we're not easy to be around.

• Understand that no matter how much you want to, you'll never completely understand how we feel and what we're going through. We can try to explain it but unless you've experienced it often times what we're describing won't make sense. And thats ok. Just knowing that you're trying and want to understand means a lot. We have our own support system that we've built around us, my own was found out in the world of twitter. An unlikely but blessed discovery of those who are experiencing the same things that I am. Who I can talk to and listen to and know that I'm not alone. Sometimes just that realization is enough to make us feel better. But don't let that make you feel insignificant. We know we're not alone physically. We know that you're there. But there are some things that you won't be able to give us no matter how much you want to. Sometimes sympathy is rejected because we're overwhelmed with it from everywhere we turn. We want to interact with someone who can empathize with us, who is there with us physically and emotionally and can give us the support and understanding that only someone with our shared experience can give.

• Let us vent our frustrations (without fear of how you'll respond). We know there's nothing you can do to help us feel better and thats ok. Sometimes having someone listen and let you cry is all we really need. We spend so much time compartmentalizing everything we're going through, overanalyzing how we think someone will respond or what we should share. Give us the gift of knowing that we can let that out without having to self-edit or even be rational. Knowing you're there to listen and wipe our tears is sometimes enough to help us get through what we're feeling. Being able to verbalize it and let it out is a huge relief. 

Know that mistakes will happen, on both our sides and that no matter what it may appear on the surface, we really are trying. We're just as unsure of how to navigate through this added challenge to a relationship as you are. We're hoping that you will be the person that will break the trend of past relationships and be the one to stick it out. We're trying desperately to give you a chance to prove you will be there for us. But we're just as afraid to hold onto that hope and be disappointed should it not work out. We wish we had the opportunity to go through life meeting people in the way most dating couples do, without having to worry about how our health and its shifting stability can disarm even the most charming and determined of suitors. We've seen those we thought would stay run for the hills. Please don't think less of us for trying to protect ourselves from having it happen again. And don't let our cautious optimism scare you away. Keep up your determined pursuit and charm away. Inside we're all just little girls waiting for our happy ending.

@girlwithMCTD goes gluten free...

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

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

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

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

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

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

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

When you can't remember...memory issues and "lupus brainfog"

I've found I often have trouble remembering things. It can be as simple as trying to find the word to make my point (or finish a sentence) to when I'm going through my nightly routine and cant remember if I took my prescriptions yet or not. Lately, I've been misplacing my phone just about every hour...sigh...

It's supremely frustrating. Ironically, I was sitting down to write out a list of topic ideas I'd had. There had been three. This was number two. I still don't know what number three had been. Yeah...Before I had finished writing this down, idea #3 had completely vanished. Try as I could, it was gone.

Is there anything we can do? Something to take, along with the handful of other Rx's and supplements that will clear our head and help us remember? Not that I've seen, and not that I'd be willing to add something else to the mix of things. Its just one more pill to remember to take...or did I?...lol...

So what can you do to deal with these little issues? The whole thing, in my experience anyway, is mostly just annoying and kinda inconvenient. I haven't stumbled upon any instance, that I can remember (ha!) that has made this a serious problem. So what do I do to survive the memory lapses? I have two words for you: post its. Yeah, I'm a huge fan. And I have them everywhere. There's a pad in my craft room, in my purse, computer bag, there's stacks of them at work, and I keep them next to the bed. There's nothing more annoying then going to bed thinking: I have to remember to do _____________ tomorrow, and then waking up the next day and having no clue what you'd wanted to MAKE SURE you did that day. So, yes, I keep them by the bed, the little notes I leave myself as I'm drifting off don't always make sense, but hey, at least I tried.

Another idea I've seen many bloggers advocate is the weekly pill reminder box. A few years ago, I could never understand why someone would have to fill one of those things every week to make sure they took their medications daily. I mean, I could see it if they were traveling, it condenses things and you don't need to take everything with you. I remember thinking, really? Is it that hard to remember if you took your pills that night or not?...And now here I am... I now understand, with unfortunate clarity how this can be a problem. It seems absurd and a bit of an exaggeration if you've never experienced it for yourself. Its hard to explain to someone how it can be, and really do you want to try? I mean, I'm 28, I don't want to come off sounding like some 80 year old who can't remember worth beans, but isn't that how we feel a good deal of the time? Not only is the memory an issue, but we're plagued by other health problems that are normally considered by most to be limited to the elderly. When people joke around that something shouldn't be an issue/problem for me, "cause I'm young" I just kinda smile and say "I may be young, but I have the body of an 80 year old". And apparently, occasionally it spreads to my memory as well...

Hair today, gone tomorrow...

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

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

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

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

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

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

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

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

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

I've been a bad blogger...

...and I need to seriously apologize to those who've been faithfully stopping in to see if I've finished the story of my flare up and hospitalization back in April. Seriously. I'm so sorry! I've been a slacker. I end up putting things off for a while because I'm not sure what/how I want to say something, and determine the best way to get it done, is to not let myself blog about anything else until I've finished what I've started. Unfortunately, that backfires, and then I'm left NOT blogging for ages. I especially want to apologize to deetipton who was sweet enough to leave me a message and let me know she was looking forward to the rest of the story, and to Charly who I had worried and has also patiently been waiting...I'll try to do better from here on out. :-/

Ok, so I had thought I'd been throwing out updates on twitter while I was in there, but apparently I was only doing that on facebook...sorry. So as a little rundown, here are the tweets you missed... :)

so..my rhuematologist was out today, n the office staff at my pcp wouldn't schedule me cause I'm selfpay...I've been sick since sun so my only option was er...an they admitted me...fun times...

April 15 at 10:50pm

 Still really sore, but my kidney levels r getting better! And I got a semi-decent night of sleep too, which is good cause I haven't been sleeping real well since wed.

April 17 at 7:01am (Sunday)

  

was allowed to take a shower today! feel so much better after that, would have been the highlight of the last week, but I also got to see the rhuematologist who put me on liquid prednisone directly through my IV. so I guess they tied. can't wait for more doses and all the swelling to go down! thanks for all your prayers! they are greatly appreciated

April 19 at 10:26pm (Tuesday)

creepy male night nurse is back...awesome... :(

April 20 at 8:29pm (Wednesday)

I get to go home!!!!

April 21 at 1:17pm (Thursday)

 So to recap, I ended up staying in the hospital for a week, basically. IT SUCKED! At least in the week leading up to my hospitalization, my painful, crappy days were spent with a comfortable temp, comfy bed, and internet service. I slept most of the day away, and when I wasn't sleeping, I took full advantage of my unlimited streaming of netflix. Not so at the hospital. No internet service available, not even to plug into one. (they did have "internet" on the tv as an option, but I maintain it doesn't count, cause the print on the screen was sooooo stinking tiny and blurred that it was useless...) They did at least have cable...score one for them, but the temp in my room was off almost all the time, it was ridiculously hot in there it seemed. (and not just to me with the 103 temps, the nurses thought so too, but said nothing till I asked cause they just thought I was cold). Needless to say, if it hadn't been for that and my blackberry, I would have gone crazy! At least I could keep up with fb and twitter on my phone and swap some texts with my sister when I was bored. I was seriously bummed about no more netflix tho, seriously, I was finally getting my moneys worth out of it and keeping some of the boredom away, and then nothing...

So back to my "fun" (serious sarcasm) time at the hospital. Here's where the details get a little gross. Because of the seriously low and dangerous level of my kidney function, they made me pee in what they called "a hat". Basically a bowl with sides that hold it on the toilet seat so that you can pee into it. They made me do this so that they could monitor my input/output. (what I drank all day, how much I went) which incidentally they didn't really do. It made my mom (the nurse) pretty angry that they weren't doing their jobs. Only one of the nurses I had actually asked me what/how much I'd had to drink all day. Most of the aides would mark when they emptied it on the sheet (which they leave on your wall...fun stuff), but they always took forever to come in and empty the stupid thing, and I often had to page them again and wait for them to come do it so I could pee again. Yeah, I HATED that thing. Around about Tuesday night, or Wednesday, the one nurse had checked with my dr and said I could stop using it and I was super happy, then the nurse nazi (the one who actually charted my intake) said I still had to do it and brought it back, I was irritated, to say the least....

So that was the interesting/gross part. Lets see....other details....(this is what happens when you let two months or more pass before blogging...oops! in my defense, I would have blogged through the whole experience, but there was no internet! sigh...) I was on 24/7 IV fluids with two different daily IV antibiotics, which is why they wouldn't let me shower until TUESDAY! I know, I felt completely gross, so it was a big accomplishment in my eyes, I felt so much better. They had to get special permission from my dr so that I could, because they had to disconnect my IV while I took one. (another tell on how bad my kidneys had been faring...) Tuesday was also the day that one of my Rheumatologist'sdr requested. And let me tell you, if he'd been my actual rheum dr I would have cried and still be looking for a better one. I was not a fan. He had my chart, but not sure how much of it he'd reviewed, and had me go through my whole  prior experience with symptoms/medications of ra/mctd. THE WHOLE FRICKEN STORY.  Which is fine, whatever, it was in the chart, but hey, I have nothing better to do than to pay you 350 to come in and listen to me tell it again, when you could read the cliff notes from my chart. Didn't care so much about that, fine, they all make you do that, but he made snarky comments through the whole thing, and really made me mad when I got to the part where I'd stopped taking the Plaquinel and he told me: You have a habit of discontinuing medications that are working for your own selfish reasons. NO KIDDING.  If I'd had the mental capacity to respond (shock had me speechless) I would have told him this: Seriously, its not as if I stopped medications against dr's orders when I stopped the Enbrel. I had an intelligent conversation with my Dr where we discussed the reasons behind me wanting to step down off of it and see if I needed it anymore. We did it gradually, monitoring my liver, rh factor and other things with my blood work, and testing each lower level to see how my condition may have gotten worse. It did not. I had started taking Omega-3 supplements prior to starting to step down to prep for it, and gradually stepped up on doses as we stepped off of the enbrel. I ended up feeling great and not needing the enbrel anymore. Which not only I thought was fantastic, but my rheum agreed was a good sign as well. (not to mention it made not having ins less of a threat, as the cash cost of enbrel--when I took it-- was around 1500 a month...) And as for the Plaquinel, I experienced the lovely eye issues that are listed as possible side effects, the blurriness and pain in my eyes from minor contact with anything was just too much for me to handle anymore. Couldn't do it. sorry. I informed my dr right away of the fact that I'd discontinued using it (which they'd told me to do if I experienced any problems) and though she wanted me to try the brand name and maintains I hadn't taken it long enough to have experienced any side effects, the problem didn't occur till I was taking the medication, and it went away after I stopped, so me and my body disagree. I take offense to the implication that I was/am doing anything to inhibit my own health and healing and actually making my condition worse than it has to be. Thats just rude. Not to mention the fact that I know my body and the way it responds and reacts to medications and other factors better than you do. I have to live with the side effects. I have to live with the pain. I have to live with the risks. So you can just take your piety and stuff it! Ok, that last sentence probably wouldn't have left my mouth, but I'd have totally been thinking it!

Anyway, regardless of the fact that he lacked tact and I didn't like his attitude, he finally gave the orders to start me on Prednisone and even brought in the first dose to be administered via my IV to really jumpstart the process. YAY! I cannot do justice to explaining the complete massivity (is that a word?) of the swelling. I took no pictures cause it was disgusting. I couldn't even fit into my clogs anymore, my fam brought in flipflops for me, and my mom bought me new socks (my reg ones were cutting off my circulation) and even those got super tight and I couldn't fit my whole foot into them (the flipflops that is). I only wore the socks when I had to go somewhere...ie other tests somewhere else in the hospital, or I was freezing.) My legs were so large in diameter I couldn't wear my regular sweats, but instead wore my seriously comfy gaucho like yoga capri pants. The swelling took away any indication that I had ankles, and my feet were so large and fat that I could barely walk, so it didnt really matter if the shoes fit. I find it funny, btw, that the sign outside my door listed me as a low fall risk, cause  I seriously almost fell the first few times I got up, and I had a hard time getting in and out of bed. I used the IV pole to help support myself in the three feet between the bed and the bathroom. No joke.

Not only did it take until day 5 for them to get my consult and prednisone started, but it was three days until one of the nurses (my favorite night nurse, I loved her! she even called my dr twice when she had different concerns, which I'm sure he didnt love; as again, she was the night nurse..haha) took my pain level 9 of 10 (and I was editing that, who takes you seriously if you tell them you're at a 12?) as a concern and asked me why I was experiencing that much pain. I pulled back the covers and showed her my sad legs/feet. She took one look got concerned and went out to check my chart. She came back and told me that there was not one, but THREE different pain meds listed that I COULD HAVE BEEN TAKING THE ENTIRE TIME, and would I like some? I can't begin to tell you how annoyed I was with all the previous nurses. I'd been giving my 9 the entire time, and not one of them asked me if I'd like anything for the pain, or thought to mention that I could take something. No one told me the order was there, and I didnt ask, because I just thought that I wasnt able to take anything because of my kidney problems. I HATE the fact that someone in the mid-20s is not taken seriously when they voice pain, and thought to be taking advantage of pain medications, which is the only thing I can think of as being the reason why none of them mentioned it in the three days prior. The 3 different pain meds were 3 different strengths, of which I took the strongest, and it brought my pain level down to a better handled level 6. And once I knew of its existence to my possibilities I was taking that every 12 hours as allowed, and it made my days, and nights much more pleasant.

Other experiences included a second chest x-ray later in the week, which verified my bronchitis had moved on to pneumonia, yay me.... My oxygenation reading got low enough that they put me on oxygen, and had a pulmonologist come in to see me. and they made me do that stupid breathing treatment another three times, with no success with any of them before they finally gave up and put me out of my misery and stopped ordering them. The pain in my chest when breathing meant that the pulmonologist  ordered a cat scan with contrast and a heart sono. Which required a heart specialist to read, can you see how all these charges kept going up through the roof? I could, and it kinda freaked me out. I can't remember when they started the o2 but they started lowering the level I was getting on Wednesday, and on Thursday they took it off to see if my o2 level was maintaining normal levels on my own so I could go home. One thing I discovered while there, that I highly recommend to all lupies/mctders out there is Tessalon pearls. A cough medicine I hadn't known existed before, but works so stinking well, I was finally able to stop coughing to sleep! In fact when I got a sinus infection a few weeks ago, I asked for a prescription. I also had a low enough magnesium that they gave me an IV full of it, and later added the pill version.

I mentioned somewhere above about all the charges adding up. And that is a nice way of putting it. I couldn't believe it when I started getting all the bills in the mail. I was literally afraid to open some of them. The one from the hospital the most. Seriously. It was too big to go in a normal envelope. It came in a 6x9 and was pretty thick. There were nine pages listing all of the charges, which added up to around 27,000 dollars. I later got an addendum of sorts which put the charges up to over 28,000. And again, thats just for the hospital charges.  I couldn't believe the fact that the room itself cost over 840 dollars A DAY! This was no 5star establishment, let me tell you, and it was a few days before I even ate much to speak of. Constant IV fluids are also pricey, and then theres the multiple blood work, the various tests they ran, and my daily medications, which I was not allowed to bring in my own. No, I instead got to pay them ridiculous amounts for them to provide them for me. Yup. So kind of them.

To top that off, there was also a 350 charge for the Pulmonologist visit. Another 400 something for the two visits from the rheumatologist (and I never saw him the second time, I dont think he actually came in...) A combined 750 for all the EPN (Erie Physicians Network) drs which included the ER doctor and my pcp who came in daily. I'm happy to report that EPN has a charity program and wrote off the whole 750. I was super relieved to not have to worry about that anymore. The hospital also has a charity program, for which I've applied, but am still waiting to hear if I get it. I had to first apply for Medicaid (again) and wait for that denial to come in so that they could verify I was ineligible for it to apply for their program. I then had to gather all the other charges and bills I incurred, my taxes from the prior year, my last months bank statements, etc to supply with my application to prove to them just how poor I really am. I'm still waiting to hear if I was approved or not, they told me it takes 3 months to process before you find out. I've basically been assured that I should get it from one of the financial ladies who came to my room to consult at the beginning of my stay, so I'm not worrying too badly, yet...

My complete total, the last time I tallied it up anyway, was around 30,000 dollars. For a week. It takes your breath away to think about having to figure out how to pay for all of it. Not to mention the fact that it rivals my school loans in being my larges debt owed, it may even exceed it... If I don't get this charity program, I may just be in debt for the rest of my life.... I'll be sure to keep you all posted as to what they decide, and what comes next! Thanks for your concern, and again, I'm sorry it took so long to finish my "little" story...and that it probably took you over 20 minutes to read about it...haha.

The ER takes a turn...(update part 2)

So my mom drives me to the ER, the wait wasn't too awful long I guess but then I was pretty out of it for a time so I guess my memory's a bit off. :-/ The last flare-up I had sent me to the ER too, because urgent care said they couldn't help me. They hooked me up with an IV because I was dehydrated and had some kidney involvement to the flare up. They did an EKG because of my fast heart rate (average of 130), and when the IV was done, they gave me a script for a z-pack and a course of prednisone and sent me home. That was the first time (that I'm aware of anyway...) that I've had any kind of organ involvement with my MCTD. Its kinda scary to think that something so important can be affected so easily and how fast things can go downhill.

I was really hoping that this time would be like the last. Yes, my symptoms were more intense, I had ridiculous swelling of my legs, feet and hands, and I hurt so bad EVERYWHERE, that I could barely move, and when I attempted it I think I even whimpered a little. Drinking water made me feel nauseous (I even threw up a few times, which is totally not normal for me) and the only thing I could keep down was tea, and I thought I was drinking a lot. Turns out, not so much. When I got in to see the Dr, I was somewhat encouraged by the fact that she was at least familiar with my disease! That almost never happens! Turns out, she's the sister of one of the other Dr's in my Rhuematologist's office. She ran a few tests, we discussed my symptoms and how I was feeling, etc. When the tests came back, we were all shocked at my kidney issues. Can't remember what the levels were, but they were desperately low. My mom said the only time she's ever seen anything worse was from dialysis patients, which-you know- is encouraging...(insert sarcasm here).

I was also having sharp pains when taking deep breaths, so I was breathing with short slow breaths to keep from pain and coughing. I think this is when I got sent for chest xray #1, but again, I'm a bit foggy on the details. I also had a lovely visit from respiratory during which they made me do a breathing treatment that tasted like crap and made me cough but produced nothing, fun thing was, couldn't really stop coughing after, awesome!

Some time later someone came back in and informed us that I was not going home, but that they were admitting me. Fantastic....

An update to recent events...Part one

The last three weeks have been more than a little crazy. As I've mentioned on here before, I've been feeling like a flare has been waiting in the background to pounce for the last few months. I've been doing everything I could think of to keep it from hitting, getting extra sleep, not overdoing it, in general, I've been curbing most anything that would push me beyond normal everyday activities, hoping that the feeling that it was coming would pass. Sadly, that dream was never realized. I woke up that Saturday morning, ready to help my sister move, and I had the horrible feeling that this was going to push it past my defenses and really hit me hard. I woke up feeling tired, and a bit achey, but knowing that the feeling had been coming for a while, and I couldn't stop it, I headed out anyway.

We worked all day, packing the truck and moving her stuff across town to our place, and moving it all in. We returned the truck and headed home. It was a long day. There were only a few pieces of heavy furniture, most of her things were just boxes, but it was an all day event, and we were exhausted.

The next morning was Sunday, I woke up feeling like crap. I knew instantly that I had a fever, and I ached all over. Stayed in bed for the morning, took some tylenol and was feeling better in the afternoon, but by late evening the fever was back. Next day was worse, higher fever, achey and in general feeling like crap. It was a "typical" flare for me, much like those I've had in the last two years, until Wednesday that is, when I actually threw up. THAT was not at all normal in my past flareups. Not sure where it came from, but as I'd just taken my medications, it tasted especially like crap and I was not happy to have them out of my system when I was feeling so crappy anyway. That was right before bed, and the next day I threw up two more times. Thought maybe I just had the flu. Wednesday my temp had hit 103.5, which is astronomical, but again as I've mentioned before, high temps have been "normal" for me when I get sick. Nobody's really sure why, and its one of the things my old Rhuematologist had been really concerned about. On Thursday, my temp hit 104.3, and had even me worried. Each time my temp went over 102, my eyesight seemed to get worse, on Thursday, even with my glasses I was having trouble reading my computer screen. It was like I didn't have them on at all. Tylenol finally brought my temp down to 101, and I felt a bit better. (how sad is that?)

On Friday, my temp stayed around 103 most of the morning, and I was so swollen and in pain that I could barely get out of bed and move in general. I tried calling my Rhuematologist to get in to see her. I was pretty sure I had a sinus infection, I had been having sinus drainage coughing and all that fun stuff, and I was in serious need of a medrol dose pack to curb the swelling. She was out of the office however and they wouldn't schedule me to see any of her partners. She was going to be out until the end of the next week. They suggested I call my PCP. They office girl "suggested" that my symptoms did not present as "rhuematology related" and so fitting me in was not a priority. She also inferred that by waiting so long since it started (from Sun to Friday when it was progressively getting worse?) that it couldn't be too bad. Thanks so much...

Called my PCP's office who also stated that they couldn't see me, and that my rhuematologist should have to fit me in. They wouldn't make my appointment because I'm uninsured and they "don't take self pay patients". Also told me that because I'd never seen him before, they weren't even listing me as a patient and he wasn't accepting new cases. I frustratingly assured them that yes, he did accept me as a patient, about 8 months ago in fact, and that he'd even called in prescriptions for me. She told me he wasn't there to confirm and they couldn't schedule without it. They suggested I go to urgent care, who I knew from the last time would tell me they couldn't help me and send me to the ER. Which was an extra expense this uninsured girl does not need. Needless to say, a frustrating runaround... Finally decided I couldn't take it any longer, and headed to the ER.

And the hits just keep on comin'...

So its been a ridiculous amount of time since my last post. And as I tweeted yesterday, every time I think about sitting myself down to catch up, my motivation flies out the window. Theres just something about being so very far behind that you just want to forget about it and leave it alone. But I will try to be better and catch you all up on whats been going on with me lately.

As you could probably tell from my tweet updates, the last couple months have been pretty crappy. I have never felt more tired and rundown than I have for the last couple months. Its crazy. I have more time to relax and sit around doing nothing and yet I feel like I've been overdoing it and running myself ragged. I hate not feeling like I have something that needs doing! I feel like if I had a reason to get up in the morning and get going, then life would somehow get back on track and all may be well again. Well, one could hope anyway....besides, I REALLY need the health insurance!

You know the little warning feeling you get right before a nice doozy of a flareup comes to visit? yeah, I've been fighting that off for...well, the last month and a half I guess. I've been sleeping as long as I feel I need to, which, I'm not proud to say, has been a majority of my time....Which really tells me how bad it really is. I only go 12-16 hours of dead to this world sleep when somethings really wrong, and boy have I been sleeping lately. And there hasn't been a day that's gone by in that time that something hasn't hurt like crazy. I'm getting so used to the pain, that something new hurting isn't a surprise, or even unexpected. Actually, the only reason I really notice is if it gets worse when I try to do something or it keeps me from doing something. lately, the time when I notice a new ache or pain is when I'm icing something else...you know the drill, quiet the pain in one place and it gets louder somewhere else...nice right?

And you want to know something really sad? I actually got excited when I found my other icepack today. Ran...well, limped...right up the stairs and put it in the freezer so I'd have it later. Yes, that's right folks. The excitement of my day was to find another icepack so that one could freeze while I used the other, etc...that's how bad things have been. No matter how I sit, sleep or walk, my right knee seems to always be killing me. And if I try to compensate, then my left one acts up too...its a no win situation... So, I've been doing the sleeping thing, and totally dosing up on the Omega-3s and just trying not to over do it...which I can say has been easy, considering that's pretty much my typical day while on unemployment... My only "injury" has been sustained while searching the internet for new job possibilities...stinking carpel tunnel.... And I've been hoping to hold off the flareup to not actually happen. When last night, while waiting for exhaustion to override the pain so I could actually sleep, I noticed that telltale rash starting to pop up along my left wrist. Yeah...fantastic! right? So I turned off the alarm, and went to bed, and slept for another 12 hours. When I woke up the rash had faded, I could still tell where it was, but it at least didn't itch anymore.

Which is more than I can say for right now...I'm off to lotion up and off to bed. Hoping it will be gone in the morning and I can just attribute it to dry skin... Wouldn't that be wonderful? Here's hoping... Have a great day all!

Uncertainty and reflection

It's been a while since I've posted. I've sat down many times and started to write. It's not as if my mind goes blank when I try to think of what to share. Its more like a thousand thoughts go running through my mind and I'm not sure where to start or how to make sense of it all. The last three months have been so simple and uneventful and yet confusing and full of discontent. And yet I have much to be thankful. I'm sitting here feeling sorry for myself, when despite everything, I've still been blessed with a lot. I may not have a job, or anything looking promising in the future, but I'm not homeless, or destitute. While I'd rather be off on my own, and often feel guilty I'm taking advantage, I have a mother who doesn't mind, and in fact enjoys, that I still live with her.

Three months ago, I faced the loss of my job wondering how it would all work out. Naively thinking I'd only need unemployment for a few weeks at most. That I'd find another job again soon. Sadly that has not been the case. And facing one disappointment after another as jobs I've applied for and hoped at getting disappear, has been unsettling to say the least. The emails from search engines keep coming, but they offer little in the way of hope. The simple fact that there is little out there should help me feel better about not having anything yet, but it doesn't ease the panic of not knowing how I'm going to continue to pay my bills and what I will do should I get sick in the meantime. I couldn't afford the COBRA payment for my insurance, and have no hope it seems of finding a job with benefits very soon. I finally curbed my pride enough to apply for medical assistance only to be denied because my unemployment benefits are too much for me to qualify. I don't have enough to purchase my own, but have too much to get the help I need...go figure...

Faced with another appointment scheduled with my new Rhuematologist, who I still have yet to see, I'm not sure what to do.  I don't want to have to reschedule it again, and yet I'd be hard pressed to come up with the $280 it would cost me to go. I need to get in and get settled with the new dr, so that she's familiar with me and my case before I should happen to get sick, God forbid. And yet I can't even afford to do that. I need to go so that I can get the prescriptions I need to continue on with the health I have now, and yet if I can't do that then I will surely get sick and we all know I can little afford what would come with that. I live with the constant fear of the what ifs of living with chronic illness. What had been a quiet voice in the back of my mind before (when I had a job and insurance) seems like I can't shut them down anymore. What if I get sick? What  will I do if the fevers start again? The pain in my chest, the racing heart and kidney problems of the last time, scare me to death. What will I do if it happens again when I have no way to help me pay for it?

And I've also been fighting anger about the whole situation. Angry that my life is not as simple as just needing a job to pay bills and other things. That my life is far more complicated than I ever could have imagined it getting. That I have to rely on things like my multiple medications (5) and other supplements (7) to help me feel somewhat normal, and have to go to quarterly dr appointments and various lab work to keep up with it all. Upset that I can barely remember what life used to be like, before I got sick. When things were "normal". Angry that swallowing 12+ pills every night, and wondering before each activity or chore if I'll feel alright in the morning, questioning what I can and can't do, that all of that has become my new "normal". Things I now do by habit and necessity. Upset that I'm forced to question whether I can handle doing something, or weighing the enjoyment of the moment against the risks of what may happen. I miss being able to do something because I want to, without having to question how it may make me feel later, or if I can actually do it at all. I miss being able to do things on the spur of the moment, decide to stay somewhere without having planned on it. Instead I have to be prepared if I decide to go somewhere overnight, I can't decide to just stay over at my sisters cause we're hanging out too late, because then I'd be missing my prescriptions and I know I'd feel like crap in the morning. I wish things were different. I wish I didn't have to worry about sickness and medications and doctor appointments. I wish I had perfect health. I wish I didn't have to worry about how people will respond to me and my illnesses, and having to wonder if people will accept me for me, regardless of my health.  (I did warn you I was sitting here feeling sorry for myself right?) sigh...

But I need to remind myself that I am indeed blessed. I have a family who loves me, friends who see me for who I truly am, and often forget I have any health problems. A wonderful Church that lifts me up and encourages me through it all. A PCP that, despite having not seen me yet either, has given me refills on one of my medications because I really needed it and he understands I can't afford to see him right now. A mom who's more than happy to take care of me when I need it. While I'm making far less than before, with loan deferment and such, I'm able to continue paying my bills on unemployment. It could be far worse. I may doubt and question what is going on in my life, but I know that God is there and is taking care of me. I am blessed. I'll try my best to remember that.

Complications of the Chronically Uninsured

Its been two and a half three months since I was laid off, and I'm still unemployed. Being home all the time is starting to feel normal and I can almost not remember what its been like to be going to work every Monday through Friday. But I desperately miss it. Its been driving me crazy to not have a job and reliable source of income. I've been making it with my normal bills, sometimes just barely, but still making it. The part that really worried me the most about not working, is being uninsured. I knew with unemployment money and my school loans being on deferrment I'd be ok for a while financially. I mean, I wouldnt be paying things off on it, but I wouldnt be going under either. However the cost of COBRA for my insurance was too much to even consider, sadly. I've been applying for jobs, waiting for calls, hoping to hear from people and watching my various prescriptions dwindle...

The cost of the actual prescription is not what was worrisome, its the fact that said prescription (most unfortunately it would HAVE to be the Mobic...) had no refills and I had none on hold at the pharmacy either. As I've mentioned previously, I've recently gone through a complete Dr overhaul. Problem is, I'd not yet seen either of my new dr's before my insurance ran out. I called my old Rhuematologist hoping he'd take pity on me and my situation and call in a refill. They're usually so accommodating and helpful, however this time not so much. I hadn't been in to see him since July, so he said he couldn't refill it for me. They did suggest I call my PCP, that they would probably call it in for me. However since my old PCP's office spitefully shuffled my file before handing it over, I didn't really see that happening.

I'd already rescheduled one appointment with my new Rhuematologist, because of the whole no insurance thing, and the fact that my "new patient" appointment would cost me around $280. So I call up my new PCP's office to state my dilemma and hopefully ask if they may be able to do anything. They check their records and find that they didn't have my medical records yet. Oops! I forgot to drop them off... I told them I had them and could stop over with them, so I did. They left a note on my file for the Dr, took my number and said they'd see what he said. Near the end of office hours the next day (when I knew they wouldnt be calling it in after that time) I call the pharmacy, as I'd not heard from the dr, to see if it was in. I was told they'd called it in the day before. YAY!! I'm so thankful for an understanding Dr and his office staff (no rudeness at all!) There was even a refill.

So that saved me the $180 it would have cost to go in for an office visit with him. Which is more than I wish to part with at one time now that I'm jobless... I've been very blessed. As I said above, the cost of filling it wasn't something I was concerned about. Giant Eagle is still running their $4 month/ $10 for 90days on certain  generic medications, and all of mine are on the list. It's saved me a ton of money and stress over how I'd be able to pay for everything.

I'm sure a lot of you know the fear of "what if I get sick?". This is only intensified when you don't have insurance for when those what ifs become reality. My flare ups (the big ones, I don't count the mini's) are intense and brutal, and the last one had me in the ER with 104 temps, 130+ heart rate, pain in my side, and chest pain when I took a deep breath, or cough, or sneeze...Turns out I had pneumonia on top of everything else, as well as some kidney problems. After the ER I had a visit with my Rhuematologist, who sent me to the Cleveland Clinic for a second opinion, etc... Needless to say, the copays and deductibles I racked up (and am still paying for...) were high enough... I can't imagine having to worry about how I'd pay off the whole thing. And as one month turned to two, and then three I had to face the fact that I needed to get something, "just in case". It's been nearly a year since my change in diagnosis, and last flare up. break for happy dance :). But this disease is not well documented and very unpredictable, and I don't want to be in the middle of feeling completely crappy when I finally face the fact I have to do something.

Sadly, I'm over the age that I'd be able to be put back on my moms insurance, as the new healthcare bill allows. Missed it by a month...dang it. Technically Gov. Rendell passed a similar bill for the state of PA that allows it for children up to age 30, but its left to the discretion of the employer to decide if they'll allow it or not, and my moms does not. So I moved on to looking online for a cheap policy that would help. Not only was I unable to find one that would cover what I needed, as well as not be disqualified because of preexisting conditions, but now I get a ton of junk calls from random insurance agents. While they've tapered off (had been at least one, sometimes more a day) I'm still getting at least one a month.

I keep praying that I'll find a new job soon. One that I'll love as much and more as the last one, and that will have the benefits I so desperately need. Theres still one out there that I applied for that hasn't yet been filled, and another that I know people have been recommending me for. I hope to hear from either soon. Disappointment and hope. Two warring emotions that have been competing for my time and attention. Neither of which I have time for. The dance over which one will win is exhausting. Hope often wins, but lately the disappointment has been creeping in to overcome it. Its a waiting game, and I'm finding my patience for it is waning thin.

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.