I've been a bad blogger...

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

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

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

April 15 at 10:50pm

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

April 17 at 7:01am (Sunday)

  

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

April 19 at 10:26pm (Tuesday)

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

April 20 at 8:29pm (Wednesday)

I get to go home!!!!

April 21 at 1:17pm (Thursday)

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

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

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

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

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

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

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

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

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

Rain, rain, go away...

It rained last night, and apparently it was one doozy of a storm that came through. I would be completely oblivious to this fact however, as I was already asleep when it began, and it was over when I got up; had it not been for the fact the ground was wet, and all my coworkers were discussing how loud and crazy it was. You see, I may have trouble falling asleep on occasion due to symptoms and just the all around blahs of having a chronic disease and all that entails, but I have always been a heavy sleeper. I once slept through a tornado coming through our area, we'd camped out down in our basement, and it was actually rather loud, but I was out and heard nothing. Which is why, when on Plaquenil I had trouble staying asleep was so disconcerting. But that’s a post for another day. Back to the storm. But first let me give you some background info: my last few days and my quest for better fitness! What I would have thought was creating today’s problems had it not been for the obvious signs, and people’s announcements, of the storm the night before.

If you have RA, Lupus, MCTD or any other arthritic like autoimmune disease, you know the almost devastating effect changes in barometric pressure can have. It's ridiculous really. I went to bed feeling rather good. I'd been trying to stick with a new exercise program: and by that I mean actually using the Pilates and core workout material/videos/equipment I already own and have...along with (so far) daily walks at the peninsula with my good friend Elizabeth. In the last four days we've walked over 12 miles: which let me tell you, is something I'm rather proud of, given my current state of not having my disease "under control". Yesterday was a little rough, I will admit. My sister Mindy went along with us, and I realized how much Elizabeth had been letting me set the pace to our walks. I was finding myself unable to keep up with them: the pain I was experiencing in my shins (weird I know, but muscles oddly are affected by Lupus/MCTD as well), knees, and feet. At one point I started to get a muscle spasm in the arch of my foot and I was regretting wearing my new sneakers.

I made a comment shortly after we started, that I could not walk that fast and my sister made some joke about stretching before exercise. And while I admittedly had not stretched, it wouldn't have mattered anyway. It was my body, and my disease's, way of complaining that I was doing more than it could handle at this point in time, and it telling me that I needed to slow down or I WILL regret it later... They did slow for a little bit, but after a while they got going again, and I was slowly falling further and further behind. I refused to push myself and be subjected to another flare-up. Missing another week of work? Home in bed, bored out of my mind, with high temps, an aching body and the need to sleep but the inability to do so? I'm sorry, not signing up for that voluntarily...no thank you!

I was trudging along behind them, not able to hear what they were talking about, regretting not having my iPod, and wondering if I just turned around and went back to my car, would they even notice? In other words, I was feeling pretty sorry for myself, and my current state and what this disease will do to you. The changes it makes to your body, the changes and compromises you have to make regarding what you are now able to do physically, not to mention the emotional toll of dealing with all these new changes, as well as getting to the point where you can accept and learn to live with it. Anyway, they eventually noticed I was lagging behind, and pulled off the trail to take a break. I didn't really need a break, just for them to slow down, but I wasn't really gonna argue with it. After we started back up again, it was a pace I could keep up with and it was all good. Another four miles accomplished! After the walk we came back to my place and hung out for a while. When they left, I was feeling so good, and really not ready for bed, so I did some ab exercises and ran up and down the basement stairs a few times. After all that I was ready for bed, and drifted off with no problems.

That brings me back to this morning, and my little rain dilemma. I still had no idea it had rained the night before when I got up, but the first thing I noticed was how much my feet hurt. As I'm getting ready, I notice the hands and the shoulder, and think: crap! I went too far! It's really bad when the mere thought of drying my hair just seems like too much work. So I did my typical wet hair twist, and headed upstairs to get my coffee on the way out the door. And that’s when I notice the large puddle at the end of our driveway, and that my car looked a little wet and was covered with a bunch of junk from the tree behind the house. That’s when the pieces started to click together...After hearing all my coworkers commenting on the severity of the storm that cinched it for me. I was doing alright pacing myself; it was the random storm that was behind it all. Which is nice, because it meant it is likely to go away when the weather evens out instead of meaning a flare was on the way.

It's amazing what a little rain will do, isn't it? Brings the old nursery rhyme to mind: "rain, rain, go away. Come...." wait a minute...maybe not. Wouldn't it be awesome if rain were not a necessary fact of life? Actually, it would be really awesome if it had no effect on me at all. I used to love it when it rained. And a good thunderstorm? Bring it on! I loved to watch the lightning flash across the sky. Now it means I have to loosen the laces on my shoes and add some extra Omega-3's to my collection of pill popping adventures, and wait for it all to pass.

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...