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.