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.

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.

Raining, ranting and more...

Alright, so I gotta warn you, I'm about to whine for just a little bit....

Do you ever find yourself trying to explain what you're feeling and how you compensate and try to avoid flares to family and friends just to have them completely disregard what you are trying to tell them...that you know your body, the reaction that you're experiencing, the progression that is inevitable and the steps you have to make to avoid complete disaster...just to have them shake their heads, give you some "helpful advice" and think they've solved your problem? I know...if you've experienced any type of chronic illness, it happens to you all the time. In fact, it may be so common to you that you just nod, maybe say a less than sincere thank you and move on to something else. I've had that conversation at least four times in the last month or so and have gotten increasingly annoyed at every conversation. It's not that I don't appreciate the fact that they care and want to help--I do! But seriously? I've been living with this for NINE years....I know what I'm feeling, I know what it means, and I know what works. And the advise given is usually something any normal sane person would find a reasonable suggestion, but again...I know what works, and believe me...if simple and reasonable worked, I would so be there. However...it does not. Let me explain...or complain...you can decide later. :)

As I've mentioned a couple of times on here, my sister and our friend Elizabeth (my one and only follower! Thanks E!) have been trying to be proactive about getting our exercise lately and have been going down to the peninsula to walk almost every day...if it's not raining (or Wednesday) we try to make it. It's also been raining off and on for the last two months...which has been KILLING me... seriously... its ridiculous... and it needs to end already...but anyway, back to my story... We're walking one day and we get to talking-somehow, I'm not sure how- about my standard Saturday morning routine. I'm a late night person, have been for years, and try as I may, I can not fall asleep before midnight. Can Not. I've tried...believe me, I've tried, I end up laying there for hours just waiting as the time slowly passes and I give up and move on to something else. Unless I'm practically out of my mind in a flare, sleep before midnight does not happen.

I've read many blogs about fellow RA and Lupus sufferers having to take naps during the day, go part time or stop working in order to compensate for the extra stress and fatigue chronic illness brings along as our constant companion. However, as a young professional, with a mountain of school loans, I don't have the luxury of sleeping in on a weekday, or taking daily naps, or even cutting my hours--also, as a single person, I need the full time status to keep and have medical coverage--and we all know how crucial that is... So to compensate for all of that, and because at the end of the busy week I'm usually exhausted, I use Saturday morning to sleep in and "recharge". I make up all the sleep I needed throughout the week and push back the clock on that countdown to flareups that inevitably comes if I overdo it. It may not be normal, but then nothing about my health has been normal in the last nine years. It works for me.

And so I'm trying to explain why I sleep in and why it works, and I get the standard answer--I get it from my mother and sister all the time, and no matter how many times I try to explain it, it still seems to be their miracle answer. "You just need to go to bed earlier..." I know...WHY didn't I ever think of that?? Seriously... And so I explain, again...why that doesn't work. But for some reason, they don't seem to get it. And I don't understand why. It's my body and while they've recently change my diagnosis, I've still been living with the same thing for the last nine years. I know what it feels like when I'm overdoing it, or about to. I know when I'm about to go to far or I need to slow down. I know when I need to take the time to sleep in, to avoid getting sick or completely mess up the way I've been feeling. I know. It may not make sense to anyone else, but it does to me. Because I live with it everyday. And I think that should count for something....don't you?

I'm just sick of having the same conversation, having to defend the fact that I don't usually get up before 10 on a Saturday morning...sometimes later if its really been a bad week, and getting the same old advice about what I'm doing wrong. Again, I know they're trying to help, and I know they want to understand and help me out, and they are some of the most supportive people I have in my life, but sometimes it just gets way too annoying.... And this concludes my ranting of the day... :)