Cleveland Conclusions...

So yesterday was the conclusion of my “Cleveland Adventures”. After driving out there in the pouring rain for most of the trip, I had a rather uneventful appointment with my CC Dr. It wasn’t completely pointless as I’d feared, because she did explain MCTD some more so I have a better understanding of what it is and know a little better what to expect. Although, the very nature of MCTD is the fact that it has no specific features or symptoms of its own, but instead includes a combination of symptoms and manifestations of a variety of other connective tissue diseases: RA, Lupus, Scleroderma, and Polymyositis (some people also include Sjogrens). For me it’s mostly RA and Lupus.

We also discussed treatment options. However, because I had already discussed with her the fact that I can’t keep driving out there—I have to take an entire day off work, not to mention gas is ridiculously priced right now—she didn’t prescribe anything. She has a rule about seeing patients for follow-up when she prescribes medications so she is sending my dr. here in Erie her recommendations.

Basically, she’s convinced that the Plaquenil is my best option. Apparently, she’s not convinced that any of the problems I listed were actually connected to my Plaquenil use—she said I wasn’t on it long enough for me to be having any type of vision or other problems. It apparently doesn’t matter that a few days after I stopped taking it things got better and eventually seemed to go back to normal. I think she believes I was overreacting and being a touch paranoid…but whatever, I’m pretty sure I’m the best judge of what symptoms/problems I was actually experiencing. Anyway, she believes that if I try the brand name version of the medication, I should be able to tolerate it better and she believes it’s my best option to decrease flare-ups and put it into “remission”.

Right now, all of my clinical features are lupus related, so she doesn’t feel that going back on the Enbrel would be beneficial—as it’s an RA medication and not for the treatment of lupus. If the Plaquenil doesn’t work, she suggests I try Methotrexate (MTX) or Imuran. I’ve taken MTX before, was on it for a few years in fact, and while it worked for a while, I’m not exactly crazy about going back on it. MTX is a form of chemo, and while the doses an RA/lupus patient use are much lower doses, it still makes me nervous. I’d very much like to have kids one day, and even with the folic acid, there were still some serious hair loss issues. Thankfully, I’ve always had thick hair, so it wasn’t really that noticeable, but pulling out handfuls of hair in the shower is disheartening regardless of how little it shows or how much you have left. I don’t know much of anything about Imuran, so I guess I have some research to do, but she did say that its very similar to MTX, so who knows…

I guess my next step is to call my dr here in Erie…who I just saw two weeks ago…and see if he wants to see me sooner than my next scheduled appointment in June. It doesn’t seem that continuing with just my current course of treatment was something she recommends, as she suggested adding any of three other medications to help control and try to eliminate the recurring flare-ups that I’ve been having the last year or so. So, that’s basically all I know so far…I’ll keep you posted!

As a side note: if you noticed on the sidebar, I’ve listed a bunch of RA and Lupus related blogs that I like to follow. Two of my favorites would have to be The Single Gal’s Guide to Rheumatoid Arthritis by Sara Nash and A Chronic Dose: A Blog about Chronic Illness, Healthcare and Writing by Laurie Edwards. I’m currently reading through Laurie’s book Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties. It’s a great book and I highly recommend it. She has a very honest and relatable way of communicating what it is we’re going through as young adults facing, and living, with chronic illness. She’s also very open about her own personal life and shares a lot about her own experiences with dr’s, treatments and life in general following her own diagnosis. It’s definitely a must read!

"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...

Do I look like I have Medicare?

So, I get a letter in the mail today from the Cleveland Clinic. It is to inform me that there are some additional charges that have been reflected on my account. Apparently because the Clinic is a hospital, no matter which office you go to or if it’s even in the actual CC hospital or outlying office practice--they can, and do charge the outpatient hospital fees/charges. The letter continues to inform me that Medicare covers most of the costs related to such charges, so there should be no worry about coverage. However, should you not have Medicare; you should contact your insurance company to determine the coverage of any additional charges. Yes, thank you....I'm 26--does it look like I'm going to be cashing in on some Medicare benefits? Why was it necessary to prattle on for two long paragraphs about the benefits and coverage when it is clearly not something that applies to me? Sigh...I hate form mail....And I'm a little afraid to find out what the charges are going to amount to. Cause these are on top of the typical dr visit copay/charges....and my hospital/ER copay is $75, unless admitted....so I'm a little nervous to see what the damage will be....That and my deductable has started over...

The Cleveland Inquisition and Redirection

I've spent the last three hours sitting here staring at my computer. I'm not sure where to start, how to start, what to say. Its been an interesting day. The drive was uneventful, I found the Dr's office with no problems, was seen quickly, and was seen by a great doctor. We sat down and basically went back to the very beginning. It's been nine years since I got sick and was diagnosed with RA. I had to really think about everything thats happened in the meantime. The medications (there've been many!), the tests, xrays, etc, all the fun stuff that makes up a persons medical history. Every detail I could remember of the last three flare ups, and what happened this last time. An hour and twenty minutes later, after rehashing all I could remember/think of that was important, or could in any way be relavent, I was sent downstairs for a barrage of lab tests. Armed with my new dr's business card, information about a medication she may possibly be placing me on, and an appointment for two weeks from now, I was sent on my way.

Needless to say, the appointment left me with more questions. Not ready to give me a diffinitive diagnosis on what she believes is "wrong" with me, until the tests are back and we sit down for part two of my "cleveland adventure". She did however leave me with an impression of what she believes to be the problem. And after spending three hours at the library immediately upon returning to Erie, I have a feeling she's probably right.

It appears that this blog, which I spent so much time working on yesterday, is a bit of a misnomer. There is the very real possibility that I do NOT have RA, and in fact actually have Lupus and Sjogrens. Lucky me, I get to trade one in for two! I was talking to my sil earlier and she asked me if I was stressed. To be honest, I'm not quite sure what to feel. I've spent the last nine years believing I've had something else. I did my research, I knew the symptoms, the treatments, the basic progression of the disease, etc. I'd accepted it. What it was, what it was doing to my body, what it had the potential to do in the future. I'd spent nine years treating it, trying to slow it down, believing we knew what the problem was and that we had it under control. And now...? I'm back to the beginning, learning about something new, going through the whole process all over again. Not only am I having to deal with the fact that I have new things to learn, but the fact that its been undiagnosed and mistreated for the last nine years. Nearly a decade of a disease with systematic problems and complications, ranging from kidneys, lungs, etc going untreated. What is that going to mean? The doctor was very kind and answered my questions, whats the difference between lupus and RA, what IS  Sjogrens, I really didnt know what to ask, what to think.

I never thought I'd be sitting down and looking at disease "options" and trying to decide which one's looked better. But there I was in the library, pouring over the Sourcebook of Immunological diseases and disorders soaking in all I could find about Lupus and Sjogrens. And finding that what I was reading lined up rather well to what I'd been experiencing. What am I feeling? I'm scared and hopeful at the same time. Scared that they're right and I have complications from not having the right treatment--Kidney problems/failure is no laughing matter--of not knowing what to expect and whats going to happen. Hopeful that it will mean we're able to better control and possibly "downsize" or eliminate the frequency and severity of my flare ups. Angry that its taken this long to figure it all out. Angry at my dr's for not finding it, myself for not going out there for a second opinion sooner, my mom for talking me out of going every time. Overwealmed with all the new information and possibilities. Tired of it all. Tired of worrying, wondering and trying to figure it all out. And just plain tired.

Adventures in Cleveland

Tomorrow, or rather today...I have an appointment with a Rheumatologist at the Cleveland Clinic. I'm not really sure what they're hoping to find...the only thing they could tell me about my recent labs were that they were consistant with inflamation--thank you captain obvious! I have RA, when do my labs NOT show inflamation? Anyway, the point of my rather spur of the moment appointment, is to get a second opinion. Last weekend, while on vacation no less...I know how to time it right? I got this nasty rash. I know, you're in for some awesome details to my wonderful life for the past week or so... It started out with just a little bit of a reaction on my arms, kinda near my wrists, and continued to spread and increase in intensity for the remainder of the weekend. It didnt even itch right away, I was just unfortunately aware that a flare up was basically inevitably coming. Yay me... By Saturday, we'd made a trip to Target for Benedryl. The fact that it didn't immediately progress into a typical (for me) flare up made me hopeful--maybe it was just an allergic reaction to the laundry detergent my brother's family used. Sadly, this appeared to not be the case. By Tuesday, I was so uncomfortable I marched myself down to urgent care after my doctor refused to prescribe Prednisone without seeing me first. After two days on high doses of Prednisone, and with the rash continueing to spread--by this point it was everywhere except my face, I got my Rhuematologist to fit me into their schedule for Thursday. They prescribed Atarax and IBProphin, gave me some paperwork for lab work, and told me to make an appointment with my allergist who I then saw Friday. By this point, I'm on so many medications, I can't even keep them straight, and its still a complete mystery. My allergist, even had the "new guy" come in and take a look. They both agreed that they'd never seen anything like it. Awesome...and completely unhelpful, thank you. So, Tuesday rolls around and my dr's office calls to ask me how things are going...and to basically tell me that they can't figure what else it can be other than a rhuematoid flare up, but they'd never seen one such as mine. I apparently have a knack for having the weirdest flare up symptoms. While a rash is apparently very common, it had only been the second time I'd had one, so when it happened last time, I wasnt aware it was RA related and went to my pcp. This time, I skipped that and went straight to my rhuematologist. This would have been my fourth flare up, I'm not really counting it, because I didnt really have any arthritis type symptoms/problems. My last three, have been one-two week long ordeals that include me spending most of that time in bed, with astronomical temperatures. I'm not kidding--I average around 104. Last time, my temp held out for four days without going down. That really freaked them out. Dr's take serious issue when you reach temps high enough to cause brain damage...Anyway, all this to say, my flare ups are never normal, and they're concerned with that and the fact that they have been pretty frequent lately...I've basically had one every 6-9 months for the last two years. They want a second opinion...to be sure that it is in fact just my RA and I don't have something else going on. So its off to Cleveland I go....later that is. I'll post more when I know more.