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.

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.

Solutions to the Double D (see below)

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

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

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

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

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

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

me: I'm sorry, what?

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

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

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

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

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

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

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

me: so whats the big deal?

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

me: ok...

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

Doctor Drama!

Things have been seriously crazy in my life right now. So you may see a few updates in a row. Don't be alarmed, its just the flow of random thoughts and posts I had in my head for a while and waiting for the actual time to put them down on "paper". And instead of creating some super ridiculous rambling post, I'm gonna break it down for you. :)

So...back to Dr drama. I've never really liked my Primary Care Physician. She tends to overreact to labs/symptoms/situations when my other Dr's roll their eyes and tell me I'm being paranoid when I ask them about it. No...sorry, not me...just got a little freaked out about the phone calls and referrals to specialists that apparently are not necessary. Before you go into a lecture on why I stayed with her for so long, let me explain...

Now don't laugh...but I saw my pediatrician until I was 17... I know right? Stop laughing. She was awesome! She's actually the Dr I was seeing when I first started getting sick and having symptoms of RA. She narrowed down the field a bit and sent me on to my rheumatologist to figure things out. That's when she decided it was time for me to find a regular PCP; it also coincided with me leaving shortly for college. So I took the first name off the list of those she suggested that would agree to take me (first mistake...always check into it before making a blind leap into the unknown. Professional referrals are good, but patient opinions are occasionally more accurate.) I saw her a few times and discovered different things I didn't like about her, but as I was leaving soon for Ohio (I live in Pa) it didn't seem like switching Dr's again was top of my priority list...I wouldn't be seeing her much anyway right?

So...red flags in my details of Dr drama:

• When discussing a possible medication addition for cramping she tells me: "well you're already taking Peroxicam, which is what I prescribe for that all the time. Let me look, I'm not sure what the highest allowable dose is..." Not even kidding...right there, looked it up. Gotta give her props for admitting she didn't know, and yes I am aware there are hundreds of medications out there and she can't know them all by heart ( I worked in a pharmacy for 4 years, believe me I know...) But seriously? If you prescribe something ALL THE TIME wouldn't you think she'd know the maximum allowable dosage?? Does not instill a lot of confidence. 
• Whenever I got sick, had any kind of infection, flare up or other medical problems she would test for anything that could even remotely be related to my symptoms. I mean everything. I can't begin to tell you how many times I've been tested for mono. I've never had it. But I've been tested for it at least 10 times, probably more. I have a chronic inflammatory disease. One of the main complaints of RA sufferers is fatigue. Seriously...if I'm achy, sore and sleeping all the time...I'm having a flare up, I don't have mono. Every time my glucose level has been a little on the high side, she'd have the tests redone. I've had the fasting time delayed glucose test twice. Both came back negative. She tells me I have occasional hyperglycemia, my rheumatologist (dr mak) tells me its normal to be elevated while I'm sick/during a flare. 

So I try to avoid going to her if at all possible, and try to only go when unrelated sickness occurs when I'm not having a routine appt with dr mak (my rheumatologist) However, not even that works all the time. Because she's my PCP, all of my test results, etc automatically get sent to her. So I'd get phone calls because she didn't like the results of blood work that she didn't order, nor did the other physicians deem necessary to report or consider a problem. And she would then insist I come in to see her about them, get additional testing, or see a specialist. However, other than the fact that she tends to be an alarmist, and lets be honest, that's not a trait I want in my Dr, (how bout you?) there are the other "little" things that completely bug me about her office.

• For starters, her receptionist is extremely rude, second only to the billing lady at my dentists office who insists that she can't separate my dental billing/info from my moms (can we say HIPPA violation?). But that's another story... 
• Also, EVERY SINGLE TIME I've gone into see her I've had a wait time of no less than an hour and a half...and that's before even being taken back to the exam room to wait some more...And I'm not just talking those sick visits she would fit me in for, these are also routine scheduled appt's. It's ridiculous. And seriously, the last thing I want to do when I feel like absolute crap, have a fever of over 101, sinus infection, etc is sit in her waiting room for two hours just to have her tell me she doesn't know whats wrong, order a bunch of tests, and tell me she'd rather refer me than prescribe anything for me. Thanks, that was an awesome use for my time, glad I woke up, drug myself out of bed, into your cold, uncomfortable office for that...yes, thank you. 

So after the last flare-up landed me in the ER with rapid heart rate, pneumonia, chest pain and irregularities in kidney function on blood tests....and I got that phone call of overloaded concern...I asked my rhuematologist for a referral for a new PCP. He of course wanted to know why I was unhappy with my current physician, but promptly gave me information upon hearing my reasons. So the search was on for a new PCP, I'd finally had it. Check for my next post on how I actually made my decision...its an interesting story... :)

"Normal" is a relative term, right?

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

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

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