Yup! So I've finally decided to give it a try. I actually have quite a few of the physical symptoms of celiac and a few years ago, I was tested for celiac with a blood test. It came back negative. Thinking nothing of it, I continued on with my life as normal. I've had many people tell me that I should try the gluten free diet and see if it would help, but I always think back on that test, and all the hassle that goes into the whole thing and decide I'm ok.
Last week, I was talking to a good friend before she finished packing up and moved to Houston. We got to talking about all the things we'd missed catching up on while she was in France. I told her about my flare up in April, she told me she'd gone gluten free. Her uncle has a diagnosed and rather serious case of celiac, and she has a thyroid condition, so she decided to give it a try. It is hereditary. And those of us with auto-immune issues know that its no secret that if you have one, you're likely to have a few auto-immune problems/conditions. Sadly, its just the nature of the game we call life.
Julie was telling me about how much better she felt since she went gf. Increase of energy, better moods, etc, then we got to talking about me. Haha. She was really convincing. She told me about a documentary she saw that explained how the wheat we're all eating today, has a much higher level of gluten than it did way back in the day. Because of genetic engineering seeds, and the plants that come from them, have had the gluten beefed up so that crops grow more uniformly and are easier to harvest. Which makes it fantastic for us. This is a major reason stated in the documentary for the increase of celiac diagnosis made in recent time. I haven't seen the film, so I'm going to assume that they also mentioned the betterment of medical science and understanding of autoimmune conditions, and the many who've stood up to inform others of this issue for the increase as well.
Sadly, Celiac is still one of the lesser understood autoimmune conditions out there, and there is still a lot that is unknown. Its also one of the hardest to definitively diagnose. Because of the many symptoms that are spread across the spectrum are also widely associated with many other AI issues, its not the first condition considered. Often, it is misdiagnosed. A condition that many state is with you from birth, it remains dormant until it one day hits you and becomes a major issue. I have a close friend who was diagnosed with celiac a few years ago, so I am fortunate to have a better than average understanding of the disease and what I need to avoid. Still, I'm doing as I always do when I make a decision and take the plunge. I'm researching the heck out of it.
I didn't decide to start the diet right away. I applied for a job in Ohio a couple of weeks ago, and I've been waiting to hear back if I'm considered a strong candidate or if I may get the job. I don't know much about my status other than the fact that before I applied they weren't completely happy with the pool of candidates and were calling HR to see if they'd had any more applications. I got an email last Thursday letting me know that I passed the first level of review, human resources, and that my application packet had been forwarded to the director of the department. I'm very excited about the job and all the aspects of it I'd be involved in. Its in the creative services department of Cedarville University, the school I attended after HS graduation and LOVED. I've been periodically checking their website for job postings and this one got me very excited. I've been thinking about going back to school and getting my BA in Graphic Design, but I wanted to be employed somewhere that may help me pay for it before I started the whole process. CU is a place I know and love and is my first choice for going back to school. The department is also where all of the graphic designers work. That is what cinched it for me. I was in, wholeheartedly. Before that, the idea of striking out on my own, after a year of unemployment, and then working at a coffee shop for below min wage +tips, gave me pause. Right now, I'm blessed with the ability to live with my mom and save on expenses during my limited budget. I still haven't been making enough to build up my savings, which I'd unfortunately had to deplete while unemployed...and sick...without insurance... and I was unsure if starting out like that was something I'd be comfortable doing. Finding out it was my dream job, made all the probably penny scrapping and the possible second job I may need in the beginning, worth it. By far. I'm super excited about the opportunity, but as I said, right now, all I know is that they would like the person they pick to start in the beginning of February. Which, as we all know, is SOON. I've been playing it hopeful, and looking around for places to live and possible roommate connections. I don't know how it will end up, but I'm just putting it all in God's hands and know that if this is where I'm supposed to be, it will all fall into place. All that to say, I was originally planning to wait until I knew about the job and see where I'd be financially (with a move, and rent, etc) before making the switch.
GF, especially right at first. You pretty much have to start all over again with most everything. If it doesn't have gluten in it, it most probably got cross contaminated at some point. I'm trusting pretty much nothing I already have open in my kitchen. Only those items in shakers that I know haven't been opened to scoop stuff out of is being used right now, everything else is being replaced.
And labeled. And placed in their own containers. I'm taking no chances that other items get into packaging or someone else accidentally contaminates something. I started the diet on Monday. After all of my internet scouring, the questions and discussions with friends dealing with going GF, and one friend who has a son with celiac, and all the book reading I've been doing, I decided that I couldn't wait any more. The more I know, and the more I read, the more I've come to realize that I may just have celiac, and this diet may work, or at the very least, going GF could help the underlying symptoms of my other AI diseases. So far, I haven't noticed much. Unless you count the fact that I've spent a bundle on plastic ware and new food items....haha. Actually, I haven't spent a ton on food yet. We do have quiet a bit of canned goods that are edible for me, and I went grocery shopping with my mom the other day, and she spent a ton of money helping me increase my options. She's gotten behind this with me 100% and has been a big support.
Right now, I'd say, I'm still very much on the learning side of it all. I'm still on the cautious side, and asking a million questions. Fortunately, I'm surrounded by a few caring friends with great experience and who have no problems answering my many questions. I'm blessed with the support of those who understand nearby...another reason I decided not to wait. So here begins my GF journey. I'll be sure to keep you posted!
Thursday, January 26, 2012
When you can't remember...memory issues and "lupus brainfog"
I've found I often have trouble remembering things. It can be as simple as trying to find the word to make my point (or finish a sentence) to when I'm going through my nightly routine and cant remember if I took my prescriptions yet or not. Lately, I've been misplacing my phone just about every hour...sigh...
It's supremely frustrating. Ironically, I was sitting down to write out a list of topic ideas I'd had. There had been three. This was number two. I still don't know what number three had been. Yeah...Before I had finished writing this down, idea #3 had completely vanished. Try as I could, it was gone.
Is there anything we can do? Something to take, along with the handful of other Rx's and supplements that will clear our head and help us remember? Not that I've seen, and not that I'd be willing to add something else to the mix of things. Its just one more pill to remember to take...or did I?...lol...
So what can you do to deal with these little issues? The whole thing, in my experience anyway, is mostly just annoying and kinda inconvenient. I haven't stumbled upon any instance, that I can remember (ha!) that has made this a serious problem. So what do I do to survive the memory lapses? I have two words for you: post its. Yeah, I'm a huge fan. And I have them everywhere. There's a pad in my craft room, in my purse, computer bag, there's stacks of them at work, and I keep them next to the bed. There's nothing more annoying then going to bed thinking: I have to remember to do _____________ tomorrow, and then waking up the next day and having no clue what you'd wanted to MAKE SURE you did that day. So, yes, I keep them by the bed, the little notes I leave myself as I'm drifting off don't always make sense, but hey, at least I tried.
Another idea I've seen many bloggers advocate is the weekly pill reminder box. A few years ago, I could never understand why someone would have to fill one of those things every week to make sure they took their medications daily. I mean, I could see it if they were traveling, it condenses things and you don't need to take everything with you. I remember thinking, really? Is it that hard to remember if you took your pills that night or not?...And now here I am... I now understand, with unfortunate clarity how this can be a problem. It seems absurd and a bit of an exaggeration if you've never experienced it for yourself. Its hard to explain to someone how it can be, and really do you want to try? I mean, I'm 28, I don't want to come off sounding like some 80 year old who can't remember worth beans, but isn't that how we feel a good deal of the time? Not only is the memory an issue, but we're plagued by other health problems that are normally considered by most to be limited to the elderly. When people joke around that something shouldn't be an issue/problem for me, "cause I'm young" I just kinda smile and say "I may be young, but I have the body of an 80 year old". And apparently, occasionally it spreads to my memory as well...
It's supremely frustrating. Ironically, I was sitting down to write out a list of topic ideas I'd had. There had been three. This was number two. I still don't know what number three had been. Yeah...Before I had finished writing this down, idea #3 had completely vanished. Try as I could, it was gone.
Is there anything we can do? Something to take, along with the handful of other Rx's and supplements that will clear our head and help us remember? Not that I've seen, and not that I'd be willing to add something else to the mix of things. Its just one more pill to remember to take...or did I?...lol...
So what can you do to deal with these little issues? The whole thing, in my experience anyway, is mostly just annoying and kinda inconvenient. I haven't stumbled upon any instance, that I can remember (ha!) that has made this a serious problem. So what do I do to survive the memory lapses? I have two words for you: post its. Yeah, I'm a huge fan. And I have them everywhere. There's a pad in my craft room, in my purse, computer bag, there's stacks of them at work, and I keep them next to the bed. There's nothing more annoying then going to bed thinking: I have to remember to do _____________ tomorrow, and then waking up the next day and having no clue what you'd wanted to MAKE SURE you did that day. So, yes, I keep them by the bed, the little notes I leave myself as I'm drifting off don't always make sense, but hey, at least I tried.
Another idea I've seen many bloggers advocate is the weekly pill reminder box. A few years ago, I could never understand why someone would have to fill one of those things every week to make sure they took their medications daily. I mean, I could see it if they were traveling, it condenses things and you don't need to take everything with you. I remember thinking, really? Is it that hard to remember if you took your pills that night or not?...And now here I am... I now understand, with unfortunate clarity how this can be a problem. It seems absurd and a bit of an exaggeration if you've never experienced it for yourself. Its hard to explain to someone how it can be, and really do you want to try? I mean, I'm 28, I don't want to come off sounding like some 80 year old who can't remember worth beans, but isn't that how we feel a good deal of the time? Not only is the memory an issue, but we're plagued by other health problems that are normally considered by most to be limited to the elderly. When people joke around that something shouldn't be an issue/problem for me, "cause I'm young" I just kinda smile and say "I may be young, but I have the body of an 80 year old". And apparently, occasionally it spreads to my memory as well...
Sunday, July 24, 2011
Hair today, gone tomorrow...
Over the past month and a half, I've been experiencing some serious hair loss. My hair has always been ridiculously thick, so to the average observer, you can't really tell. But if you know whats going on, you can tell. And as the title suggests, my biggest fear is that it will disappear in the near future. I've been losing hair in increasingly larger chunks as time has gone on, and the question that haunts me is this: how much longer can this continue before other people start to notice and before there's nothing left to lose? Seriously. I've joked to my sister that if I could untangle the mess that I've been losing, I'd have enough to make a decent wig in about a week. It's been that bad.
Today, I must admit, has been the worst of it. When I pulled out my pony tail holder there was a tangled clump attached to the band. I've been gently running my fingers through my hair before washing it lately, trying to limit the amount that could get stuck in the drain. And today there was a lot--pre wash.... Another couple clumps while washing, and a surprising amount after while combing it out before drying, and I have to say, I almost cried when I saw how much hair was in my hand that time. But I was in a hurry, running late for church so I brushed it off (some of it quite literally...) and kept going. When I got home and saw how much hair was in the trash can next to the sink, thats when I lost it. Today, I cried because I'm losing my hair. Even writing this I'm fighting back tears. It may sound vain and superficial, but what 27 year old woman can deal with the fact that they're losing their hair? You may be a better person than me, but I'm not taking it well. At least not today.
I've been ignoring it to this point, but when my mom, the nurse, who usually tells me its nothing to worry about and its not worth bothering the dr, tells me that maybe I should call and ask if theres something that would help....well that just broke down my last bit of control and indecisiveness over there being a problem. I can certainly tell that its thinner. I'm shocked when I pull back my hair and notice how much of a difference there is in how thick it used to be. But then I'm used to what it always used to feel like in relation to what is there now. The fact that she can tell that it visibly looks thinner, not in a patchy, bald-spot kinda way (Thank God!, and I know, because I've been carefully, almost obsessively, checking) but in a loss of volume kinda way, then there is definitely something wrong that I want to try to put a stop to before its too late. This may seem super dramatic, but I'm getting desperate. I've lost a lot, and I'm worried it will continue and I won't be able to stop it.
There are many reasons why I'm freaking out right now. For starters, and the most obvious...I'm a girl. Yup. We get up early and spend hours working on our hair, trying to get it just right so we feel like we look fabulous. Ok, so I've never gotten up early to work on my hair, and I think I can count on one hand the times I've spent more than half an hour on it (its typically around 15-20 min, including washing it) but the theory of girl pride of our hair still remains. I don't consider myself a vain person, and I hope no one else would, but what 20 something woman wouldn't have self-esteem issues over hair loss? Not to mention the fact that I'm a single woman experiencing hair loss. Whats the first thing a guy notices about a girl? What we look like. And lets be honest. Theres enough to be self-conscious about when you like someone, want to date, or you are dating that you are worrying about, you don't need to add hair loss to the mix on top of it all.
I just started a new job. No one there knows that I have health problems. Theres
I'm trying to decide if I should include photos. Part of me is wants to hide the glaring details of how much is in there, a small voice piping up that hey, who wants to see the contents of my trash cans? And I quite literally started tearing up when I saw how much was there when walking by it...seriously. Its. that. bad. I've even checked the mirror a few times just to appease my own fear that yes. its still there, and I still look normal. Maybe I will include pics....
Pic 1 is what I lost while washing my hair, 2 is from after washing, and 3 are random hair balls I found on the floor. Seriously, this is embarrassing...
I guess it really hit home, when I told my sister that I didn't think I'd go for a walk with her today, because of how much I lost this morning, because I didnt want to have to wash it again today and go through the whole ordeal again. And she responded with a text asking me if I was feeling alright. And the truth of it is, that I am. I feel pretty normal, aside from being a bit sore when I get up. And its really only in the back of my ankle, it feels kinda as if I over exercised and my muscle is tight, and it goes away after a few minutes of moving. Other than that, I'm just having to readjust to getting used to sitting for most of the day again. And my job really has a lot of up and down time so it hasn't really been a big issue either. So really not much physically to complain about. Unless of course, you count losing your hair as a physical issue... :) Its more of a psychological thing than anything I guess. So that about sums up my day. I've been losing more and more lately, and today I hit my breaking point. I'm feeling a mite depressed, and hoping to find an easy fix. Praying that it won't last long, and that soon I'll be laughing about this whole situation. Please??
Meanwhile, I'm going to try to end my pity-party...I think I'll start by taking out the trash....
Today, I must admit, has been the worst of it. When I pulled out my pony tail holder there was a tangled clump attached to the band. I've been gently running my fingers through my hair before washing it lately, trying to limit the amount that could get stuck in the drain. And today there was a lot--pre wash.... Another couple clumps while washing, and a surprising amount after while combing it out before drying, and I have to say, I almost cried when I saw how much hair was in my hand that time. But I was in a hurry, running late for church so I brushed it off (some of it quite literally...) and kept going. When I got home and saw how much hair was in the trash can next to the sink, thats when I lost it. Today, I cried because I'm losing my hair. Even writing this I'm fighting back tears. It may sound vain and superficial, but what 27 year old woman can deal with the fact that they're losing their hair? You may be a better person than me, but I'm not taking it well. At least not today.
I've been ignoring it to this point, but when my mom, the nurse, who usually tells me its nothing to worry about and its not worth bothering the dr, tells me that maybe I should call and ask if theres something that would help....well that just broke down my last bit of control and indecisiveness over there being a problem. I can certainly tell that its thinner. I'm shocked when I pull back my hair and notice how much of a difference there is in how thick it used to be. But then I'm used to what it always used to feel like in relation to what is there now. The fact that she can tell that it visibly looks thinner, not in a patchy, bald-spot kinda way (Thank God!, and I know, because I've been carefully, almost obsessively, checking) but in a loss of volume kinda way, then there is definitely something wrong that I want to try to put a stop to before its too late. This may seem super dramatic, but I'm getting desperate. I've lost a lot, and I'm worried it will continue and I won't be able to stop it.
There are many reasons why I'm freaking out right now. For starters, and the most obvious...I'm a girl. Yup. We get up early and spend hours working on our hair, trying to get it just right so we feel like we look fabulous. Ok, so I've never gotten up early to work on my hair, and I think I can count on one hand the times I've spent more than half an hour on it (its typically around 15-20 min, including washing it) but the theory of girl pride of our hair still remains. I don't consider myself a vain person, and I hope no one else would, but what 20 something woman wouldn't have self-esteem issues over hair loss? Not to mention the fact that I'm a single woman experiencing hair loss. Whats the first thing a guy notices about a girl? What we look like. And lets be honest. Theres enough to be self-conscious about when you like someone, want to date, or you are dating that you are worrying about, you don't need to add hair loss to the mix on top of it all.
I just started a new job. No one there knows that I have health problems. Theres
I'm trying to decide if I should include photos. Part of me is wants to hide the glaring details of how much is in there, a small voice piping up that hey, who wants to see the contents of my trash cans? And I quite literally started tearing up when I saw how much was there when walking by it...seriously. Its. that. bad. I've even checked the mirror a few times just to appease my own fear that yes. its still there, and I still look normal. Maybe I will include pics....
Pic 1 is what I lost while washing my hair, 2 is from after washing, and 3 are random hair balls I found on the floor. Seriously, this is embarrassing...
I guess it really hit home, when I told my sister that I didn't think I'd go for a walk with her today, because of how much I lost this morning, because I didnt want to have to wash it again today and go through the whole ordeal again. And she responded with a text asking me if I was feeling alright. And the truth of it is, that I am. I feel pretty normal, aside from being a bit sore when I get up. And its really only in the back of my ankle, it feels kinda as if I over exercised and my muscle is tight, and it goes away after a few minutes of moving. Other than that, I'm just having to readjust to getting used to sitting for most of the day again. And my job really has a lot of up and down time so it hasn't really been a big issue either. So really not much physically to complain about. Unless of course, you count losing your hair as a physical issue... :) Its more of a psychological thing than anything I guess. So that about sums up my day. I've been losing more and more lately, and today I hit my breaking point. I'm feeling a mite depressed, and hoping to find an easy fix. Praying that it won't last long, and that soon I'll be laughing about this whole situation. Please??
Meanwhile, I'm going to try to end my pity-party...I think I'll start by taking out the trash....
Saturday, July 23, 2011
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... :)
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.
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.
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... :)
April 17 at 7:01am (Sunday)
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.
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