An update to recent events...Part one

The last three weeks have been more than a little crazy. As I've mentioned on here before, I've been feeling like a flare has been waiting in the background to pounce for the last few months. I've been doing everything I could think of to keep it from hitting, getting extra sleep, not overdoing it, in general, I've been curbing most anything that would push me beyond normal everyday activities, hoping that the feeling that it was coming would pass. Sadly, that dream was never realized. I woke up that Saturday morning, ready to help my sister move, and I had the horrible feeling that this was going to push it past my defenses and really hit me hard. I woke up feeling tired, and a bit achey, but knowing that the feeling had been coming for a while, and I couldn't stop it, I headed out anyway.

We worked all day, packing the truck and moving her stuff across town to our place, and moving it all in. We returned the truck and headed home. It was a long day. There were only a few pieces of heavy furniture, most of her things were just boxes, but it was an all day event, and we were exhausted.

The next morning was Sunday, I woke up feeling like crap. I knew instantly that I had a fever, and I ached all over. Stayed in bed for the morning, took some tylenol and was feeling better in the afternoon, but by late evening the fever was back. Next day was worse, higher fever, achey and in general feeling like crap. It was a "typical" flare for me, much like those I've had in the last two years, until Wednesday that is, when I actually threw up. THAT was not at all normal in my past flareups. Not sure where it came from, but as I'd just taken my medications, it tasted especially like crap and I was not happy to have them out of my system when I was feeling so crappy anyway. That was right before bed, and the next day I threw up two more times. Thought maybe I just had the flu. Wednesday my temp had hit 103.5, which is astronomical, but again as I've mentioned before, high temps have been "normal" for me when I get sick. Nobody's really sure why, and its one of the things my old Rhuematologist had been really concerned about. On Thursday, my temp hit 104.3, and had even me worried. Each time my temp went over 102, my eyesight seemed to get worse, on Thursday, even with my glasses I was having trouble reading my computer screen. It was like I didn't have them on at all. Tylenol finally brought my temp down to 101, and I felt a bit better. (how sad is that?)

On Friday, my temp stayed around 103 most of the morning, and I was so swollen and in pain that I could barely get out of bed and move in general. I tried calling my Rhuematologist to get in to see her. I was pretty sure I had a sinus infection, I had been having sinus drainage coughing and all that fun stuff, and I was in serious need of a medrol dose pack to curb the swelling. She was out of the office however and they wouldn't schedule me to see any of her partners. She was going to be out until the end of the next week. They suggested I call my PCP. They office girl "suggested" that my symptoms did not present as "rhuematology related" and so fitting me in was not a priority. She also inferred that by waiting so long since it started (from Sun to Friday when it was progressively getting worse?) that it couldn't be too bad. Thanks so much...

Called my PCP's office who also stated that they couldn't see me, and that my rhuematologist should have to fit me in. They wouldn't make my appointment because I'm uninsured and they "don't take self pay patients". Also told me that because I'd never seen him before, they weren't even listing me as a patient and he wasn't accepting new cases. I frustratingly assured them that yes, he did accept me as a patient, about 8 months ago in fact, and that he'd even called in prescriptions for me. She told me he wasn't there to confirm and they couldn't schedule without it. They suggested I go to urgent care, who I knew from the last time would tell me they couldn't help me and send me to the ER. Which was an extra expense this uninsured girl does not need. Needless to say, a frustrating runaround... Finally decided I couldn't take it any longer, and headed to the ER.

And the hits just keep on comin'...

So its been a ridiculous amount of time since my last post. And as I tweeted yesterday, every time I think about sitting myself down to catch up, my motivation flies out the window. Theres just something about being so very far behind that you just want to forget about it and leave it alone. But I will try to be better and catch you all up on whats been going on with me lately.

As you could probably tell from my tweet updates, the last couple months have been pretty crappy. I have never felt more tired and rundown than I have for the last couple months. Its crazy. I have more time to relax and sit around doing nothing and yet I feel like I've been overdoing it and running myself ragged. I hate not feeling like I have something that needs doing! I feel like if I had a reason to get up in the morning and get going, then life would somehow get back on track and all may be well again. Well, one could hope anyway....besides, I REALLY need the health insurance!

You know the little warning feeling you get right before a nice doozy of a flareup comes to visit? yeah, I've been fighting that off for...well, the last month and a half I guess. I've been sleeping as long as I feel I need to, which, I'm not proud to say, has been a majority of my time....Which really tells me how bad it really is. I only go 12-16 hours of dead to this world sleep when somethings really wrong, and boy have I been sleeping lately. And there hasn't been a day that's gone by in that time that something hasn't hurt like crazy. I'm getting so used to the pain, that something new hurting isn't a surprise, or even unexpected. Actually, the only reason I really notice is if it gets worse when I try to do something or it keeps me from doing something. lately, the time when I notice a new ache or pain is when I'm icing something else...you know the drill, quiet the pain in one place and it gets louder somewhere else...nice right?

And you want to know something really sad? I actually got excited when I found my other icepack today. Ran...well, limped...right up the stairs and put it in the freezer so I'd have it later. Yes, that's right folks. The excitement of my day was to find another icepack so that one could freeze while I used the other, etc...that's how bad things have been. No matter how I sit, sleep or walk, my right knee seems to always be killing me. And if I try to compensate, then my left one acts up too...its a no win situation... So, I've been doing the sleeping thing, and totally dosing up on the Omega-3s and just trying not to over do it...which I can say has been easy, considering that's pretty much my typical day while on unemployment... My only "injury" has been sustained while searching the internet for new job possibilities...stinking carpel tunnel.... And I've been hoping to hold off the flareup to not actually happen. When last night, while waiting for exhaustion to override the pain so I could actually sleep, I noticed that telltale rash starting to pop up along my left wrist. Yeah...fantastic! right? So I turned off the alarm, and went to bed, and slept for another 12 hours. When I woke up the rash had faded, I could still tell where it was, but it at least didn't itch anymore.

Which is more than I can say for right now...I'm off to lotion up and off to bed. Hoping it will be gone in the morning and I can just attribute it to dry skin... Wouldn't that be wonderful? Here's hoping... Have a great day all!

Uncertainty and reflection

It's been a while since I've posted. I've sat down many times and started to write. It's not as if my mind goes blank when I try to think of what to share. Its more like a thousand thoughts go running through my mind and I'm not sure where to start or how to make sense of it all. The last three months have been so simple and uneventful and yet confusing and full of discontent. And yet I have much to be thankful. I'm sitting here feeling sorry for myself, when despite everything, I've still been blessed with a lot. I may not have a job, or anything looking promising in the future, but I'm not homeless, or destitute. While I'd rather be off on my own, and often feel guilty I'm taking advantage, I have a mother who doesn't mind, and in fact enjoys, that I still live with her.

Three months ago, I faced the loss of my job wondering how it would all work out. Naively thinking I'd only need unemployment for a few weeks at most. That I'd find another job again soon. Sadly that has not been the case. And facing one disappointment after another as jobs I've applied for and hoped at getting disappear, has been unsettling to say the least. The emails from search engines keep coming, but they offer little in the way of hope. The simple fact that there is little out there should help me feel better about not having anything yet, but it doesn't ease the panic of not knowing how I'm going to continue to pay my bills and what I will do should I get sick in the meantime. I couldn't afford the COBRA payment for my insurance, and have no hope it seems of finding a job with benefits very soon. I finally curbed my pride enough to apply for medical assistance only to be denied because my unemployment benefits are too much for me to qualify. I don't have enough to purchase my own, but have too much to get the help I need...go figure...

Faced with another appointment scheduled with my new Rhuematologist, who I still have yet to see, I'm not sure what to do.  I don't want to have to reschedule it again, and yet I'd be hard pressed to come up with the $280 it would cost me to go. I need to get in and get settled with the new dr, so that she's familiar with me and my case before I should happen to get sick, God forbid. And yet I can't even afford to do that. I need to go so that I can get the prescriptions I need to continue on with the health I have now, and yet if I can't do that then I will surely get sick and we all know I can little afford what would come with that. I live with the constant fear of the what ifs of living with chronic illness. What had been a quiet voice in the back of my mind before (when I had a job and insurance) seems like I can't shut them down anymore. What if I get sick? What  will I do if the fevers start again? The pain in my chest, the racing heart and kidney problems of the last time, scare me to death. What will I do if it happens again when I have no way to help me pay for it?

And I've also been fighting anger about the whole situation. Angry that my life is not as simple as just needing a job to pay bills and other things. That my life is far more complicated than I ever could have imagined it getting. That I have to rely on things like my multiple medications (5) and other supplements (7) to help me feel somewhat normal, and have to go to quarterly dr appointments and various lab work to keep up with it all. Upset that I can barely remember what life used to be like, before I got sick. When things were "normal". Angry that swallowing 12+ pills every night, and wondering before each activity or chore if I'll feel alright in the morning, questioning what I can and can't do, that all of that has become my new "normal". Things I now do by habit and necessity. Upset that I'm forced to question whether I can handle doing something, or weighing the enjoyment of the moment against the risks of what may happen. I miss being able to do something because I want to, without having to question how it may make me feel later, or if I can actually do it at all. I miss being able to do things on the spur of the moment, decide to stay somewhere without having planned on it. Instead I have to be prepared if I decide to go somewhere overnight, I can't decide to just stay over at my sisters cause we're hanging out too late, because then I'd be missing my prescriptions and I know I'd feel like crap in the morning. I wish things were different. I wish I didn't have to worry about sickness and medications and doctor appointments. I wish I had perfect health. I wish I didn't have to worry about how people will respond to me and my illnesses, and having to wonder if people will accept me for me, regardless of my health.  (I did warn you I was sitting here feeling sorry for myself right?) sigh...

But I need to remind myself that I am indeed blessed. I have a family who loves me, friends who see me for who I truly am, and often forget I have any health problems. A wonderful Church that lifts me up and encourages me through it all. A PCP that, despite having not seen me yet either, has given me refills on one of my medications because I really needed it and he understands I can't afford to see him right now. A mom who's more than happy to take care of me when I need it. While I'm making far less than before, with loan deferment and such, I'm able to continue paying my bills on unemployment. It could be far worse. I may doubt and question what is going on in my life, but I know that God is there and is taking care of me. I am blessed. I'll try my best to remember that.

Complications of the Chronically Uninsured

Its been two and a half three months since I was laid off, and I'm still unemployed. Being home all the time is starting to feel normal and I can almost not remember what its been like to be going to work every Monday through Friday. But I desperately miss it. Its been driving me crazy to not have a job and reliable source of income. I've been making it with my normal bills, sometimes just barely, but still making it. The part that really worried me the most about not working, is being uninsured. I knew with unemployment money and my school loans being on deferrment I'd be ok for a while financially. I mean, I wouldnt be paying things off on it, but I wouldnt be going under either. However the cost of COBRA for my insurance was too much to even consider, sadly. I've been applying for jobs, waiting for calls, hoping to hear from people and watching my various prescriptions dwindle...

The cost of the actual prescription is not what was worrisome, its the fact that said prescription (most unfortunately it would HAVE to be the Mobic...) had no refills and I had none on hold at the pharmacy either. As I've mentioned previously, I've recently gone through a complete Dr overhaul. Problem is, I'd not yet seen either of my new dr's before my insurance ran out. I called my old Rhuematologist hoping he'd take pity on me and my situation and call in a refill. They're usually so accommodating and helpful, however this time not so much. I hadn't been in to see him since July, so he said he couldn't refill it for me. They did suggest I call my PCP, that they would probably call it in for me. However since my old PCP's office spitefully shuffled my file before handing it over, I didn't really see that happening.

I'd already rescheduled one appointment with my new Rhuematologist, because of the whole no insurance thing, and the fact that my "new patient" appointment would cost me around $280. So I call up my new PCP's office to state my dilemma and hopefully ask if they may be able to do anything. They check their records and find that they didn't have my medical records yet. Oops! I forgot to drop them off... I told them I had them and could stop over with them, so I did. They left a note on my file for the Dr, took my number and said they'd see what he said. Near the end of office hours the next day (when I knew they wouldnt be calling it in after that time) I call the pharmacy, as I'd not heard from the dr, to see if it was in. I was told they'd called it in the day before. YAY!! I'm so thankful for an understanding Dr and his office staff (no rudeness at all!) There was even a refill.

So that saved me the $180 it would have cost to go in for an office visit with him. Which is more than I wish to part with at one time now that I'm jobless... I've been very blessed. As I said above, the cost of filling it wasn't something I was concerned about. Giant Eagle is still running their $4 month/ $10 for 90days on certain  generic medications, and all of mine are on the list. It's saved me a ton of money and stress over how I'd be able to pay for everything.

I'm sure a lot of you know the fear of "what if I get sick?". This is only intensified when you don't have insurance for when those what ifs become reality. My flare ups (the big ones, I don't count the mini's) are intense and brutal, and the last one had me in the ER with 104 temps, 130+ heart rate, pain in my side, and chest pain when I took a deep breath, or cough, or sneeze...Turns out I had pneumonia on top of everything else, as well as some kidney problems. After the ER I had a visit with my Rhuematologist, who sent me to the Cleveland Clinic for a second opinion, etc... Needless to say, the copays and deductibles I racked up (and am still paying for...) were high enough... I can't imagine having to worry about how I'd pay off the whole thing. And as one month turned to two, and then three I had to face the fact that I needed to get something, "just in case". It's been nearly a year since my change in diagnosis, and last flare up. break for happy dance :). But this disease is not well documented and very unpredictable, and I don't want to be in the middle of feeling completely crappy when I finally face the fact I have to do something.

Sadly, I'm over the age that I'd be able to be put back on my moms insurance, as the new healthcare bill allows. Missed it by a month...dang it. Technically Gov. Rendell passed a similar bill for the state of PA that allows it for children up to age 30, but its left to the discretion of the employer to decide if they'll allow it or not, and my moms does not. So I moved on to looking online for a cheap policy that would help. Not only was I unable to find one that would cover what I needed, as well as not be disqualified because of preexisting conditions, but now I get a ton of junk calls from random insurance agents. While they've tapered off (had been at least one, sometimes more a day) I'm still getting at least one a month.

I keep praying that I'll find a new job soon. One that I'll love as much and more as the last one, and that will have the benefits I so desperately need. Theres still one out there that I applied for that hasn't yet been filled, and another that I know people have been recommending me for. I hope to hear from either soon. Disappointment and hope. Two warring emotions that have been competing for my time and attention. Neither of which I have time for. The dance over which one will win is exhausting. Hope often wins, but lately the disappointment has been creeping in to overcome it. Its a waiting game, and I'm finding my patience for it is waning thin.