For the love of...

I put off upping the Sulfasalazine for a couple of days and ended up with a sore throat. This was listed as one of the "stop taking immediately" side effects, so I did. Then we went out of town and I didn't have a chance to ask my doctor about it. Why haven't I called him yet despite coming back on Sunday? Because that would make sense and we all know how I can't have anything make sense. I guess part of it is because I was busy catching up on work and the other part was that I figure that since I haven't keeled over that it's probably nothing. Still, I will be calling there tomorrow as I would like to go back on it if possible. I wouldn't be surprised if the sore throat is from reflux. I did the 14-day regimen of Prilosec and it worked well. Coincidentally (or not) after finishing the recommended amount, a few days later (about the same time I was due to up my dosage of the Sulfasalazine) I got the sore throat. So maybe it is reflux and not med side effects. Of course the crap part of all of this is that if it is reflux then that means I am screwed in that dept. thanks to the NSAID's and Pred. Just one more pill to take for a long time I guess.

I also rescheduled my liver biopsy to Aug. 9th at 11 a.m. Given that we have 3 events this weekend I figured it would be better to not be recovering from a hole being punched in my liver. Wise decision on my part as I have been swamped and stressed.

Leg-wise I have still been very achy and grudgingly taking the Percocet. I would really, really, really like to wean off of these as I do worry about becoming addicted. Regardless of whether or not I need them now doesn't matter. I don't like it and they freak me the hell out.

Hannibal Oliver (Hannibal from Dr. Lecter since he liked liver so much, Oliver from a gal who named "it" on the internets for me) is growing nicely. Not too fast, yet enough to make me shake my head and groan when I look down. When DH and I were up in Portland this past weekend we passed by a maternity store and I was THIS close to going in. The only thing that stopped me was knowing full well that anything with the word "maternity" on it automatically price jumps by about 100%. Boooooooo. For now I'll stick with my new flowy-bottom tops that I adore and curse at my snug (re: normal) t-shirts. I tell ya, I used to think I had a belly that needed toning and would lament that I looked pregnant when I wore sweatpants. Excuse me while I go smack myself upside the head. Plus, nothing is worse than seeing your belly enlarge and your boobs stay the same size. At least if they got bigger I'd be proportionate but NO...can't have that now can we? Eh, fiddlesticks.

And yes, even though I know you don't have to ask, I'm still exhausted. That part hasn't changed.

Recently

I've been exhausted and swamped with work lately so I haven't had time to blog. I saw Dr. B last week and he seems to be quite worried about my liver. With the enzymes being elevated and me having lots of pain in my right upper quadrant, he figured it was time to do a CT and see if anything is going on. That will take place on Thursday. Should be loads of fun.

Still no name on what I have. Dr. B says that he has a few patients that make him scratch his head. Apparently I am one of them. I asked about the Alpha-1 test but he said he didn't think it was clinically significant. This was before he went into worry mode over my liver or else I would've brought it up. I guess I should have brought it up anyways but I just don't like arguing. Especially with a doctor that seems to think I don't know much. I did, however, give him my list of symptoms, test results, and what have you. He seemed both impressed and thankful for it. Who knows if he'll actually read it, if it will go in my chart, or if it will end up in the trash.

Dr. B mentioned a new med for me yet didn't prescribe it. My dad seems to think it's because Dr. B was probably waiting on the results of my bloodwork (yep, had to have more blood drawn) before he decided what dosage to give me. I called today and left a message as I have half a Percocet left. I had hoped they would prescribe me something--either the new med, the Percocet, or both. This week was/is a hectic one for me work-wise and my legs scream not too long after I wake up. I hate to take anything, yet I hate to feel like I do too. So I'm sucking it up and asking for more.

As mentioned earlier I had another trip to the lab. This time Dr. B wants to rule out Wilson's Disease and an iron overload--neither of which he (or I) think I have. Nevertheless, he's being thorough for sure. I saw he was also checking some other routine stuff. We'll see if anything comes back elevated. I purposefully did not take any pain meds in the morning so that I could both tell Dr. B exactly where the pain was and at what level, plus I wanted a "clean" system for blood draws. No idea if it helped. I figure I'll pick up my results tomorrow. I have to head down to BMC to get some stuff to drink for the CT so a quick jaunt to the hospital is in the cards.

Dr. B also gave me a fast once over. Said many tender spots are also fibro spots but didn't say I have it. Who knows. It seems the Prednisone did help. After being off of it for awhile now I can honestly say that while it definitely did not take away all of my pain and I did have to take the Percocet too, there was a slight improvement. Not enough to endure the massive GERD issues, though. My pinky benefited from the Pred and now it's back to yelling at me. Grumpy little thing.

Still kickin'

It's been forever since I blogged. The last time I was on the Pred, waiting and hoping for something to kick in. Finally, after giving the steroids a try for over two weeks and not seeing a ton of improvement--plus having reflux issues that were horrid--I stopped them. I had called Dr. B on Tues. as per directed, told the nurse how I was doing w/the Pred, and never heard back (well, Dr. B did call on Fri. but I was gone). I got sick of waiting to find out what I should be doing or shouldn't be doing, so I tapered off the Pred myself. Of course I did it way too fast and my blood sugar paid dearly for it. Between the stress of this past weekend for my job (pretty much everything that could go wrong DID), stopping the Pred, and the resulting health issues of doing so, I am AMAZED I didn't end up in the hospital. Man did it suck. My heart was racing, my head felt like it was going to explode, and I was jittery as if I had drank a whole pot of coffee. I had a helluva time keeping my blood sugar up (doesn't help that I have Hypoglycemia to begin with), especially since I didn't feel like eating as I was nauseous. In the end the Pred wore off and my adrenal glands bounced back as best they could.

I will say that I think the Pred probably helped more than it seemed as after going off of it I've been more sore than I was. However, it wasn't nearly enough to make me want to go back on it. My throat is still sore and I'm still fighting reflux.

My appt. w/Dr. B was yesterday, but they called to cancel/reschedule so I will see him tomorrow. I have a feeling I will leave tomorrow w/no answers and am really not looking forward to this visit. DH keeps asking me why I don't just see a different doctor if I feel like Dr. B isn't listening to me but I did say I would see Dr. B one more time and decide from there. I don't need a doctor to hold my hand, or act sorry for me, or coddle me--but I do need a doctor that I believe is reading my chart to try and link things together (that's why I filled out the paperwork in the first place), knows what he/she is doing (as in doesn't tell me that they have no idea what a certain test is), and honestly cares about his/her patients. That's not too much to ask for, right?

Both eyes have taken turns with the redness and pain again. The other night when I went to bed even I was shocked at how pink/red my right eye was. This time the entire white area was colored in. Last night I was this () close to looking for the eyedrops as my left one was killing me. Instead I decided that it would take too much effort and as I've been exhausted again, I rode out the pain.

This past weekend was incredibly difficult for me. I had three weddings (two to decorate and tear down, and one to shoot). If it had not been for my dad and husband doing a majority of the decorating I have no idea how I would've made it. Actually, looking back I have no idea how I made it either. The sheer stress and physicality of everything was overwhelming for my tired, hurting, body. I am still recovering from it all. I am aching all over and having to take my Percocet in the mornings again plus I'm super sleepy. Even going to bed at 10 p.m. and getting up at 8 a.m. isn't enough rest. Up until today I was moving like an 80 yr. old...slow, cautious, every step hurting me. I broke down and bought some Crocs as I hear they are fabulous and thus far I really like them. Can't make an exact call just yet since I'm sore all over.

There is no rest for the weary, however, as we have a big event this week/weekend, another small one next week (which I will have to decorate by myself), and a fairly intense wedding the following weekend. Thankfully July is much quieter and I plan to keep it that way as much as possible! Aug. is semi-busy and then we are slammed once again in Sept. and Oct.

I really hope I can get on something that works starting this week!

Thick in the fog

My brain has left me and I have no idea where it went. But I want it back. Like yesterday.

This morning I had to have my husband help me count my Prednisone because I couldn't remember if I had taken one already...just a scant 10 mins. prior to all of the confusion. I tried remembering. I tried very hard. But no matter what I did, no answer would come to me. I knew what I had been doing, and part of it was familiar, yet I didn't have enough details to know if I had put a pill in my mouth and swallowed it...or not. Counting the pills yielded further confusion as the amount didn't match up at all with what it should have. If I started the pills on a Tues., took one a day for seven days, then by the following Tues. I should have had 23 left. So then you double the dose for 4 days and you have 23 - 8 = 15. I had 16 left. I'm pretty sure I haven't skipped any pills, however if I had I wouldn't remember it now!

So I popped the pill. I am really hoping I didn't just double my dosage in a matter of minutes yet there's not turning back now.

Everything else is the same. I felt like total shit last night. Headache, woozy/hypoglycemia-like feeling, super sore throat, heartburn, and my heart was racing. That may have been exacerbated by the chocolate bar I ate (forgive me dieting Gods...I tried) or it may have been the late dinner and Pred. Who knows. Either way it wasn't fun. Pain is the same. Still achy/flu-y feeling a lot, but seemingly less than without the Pred. I think...it's been so long who remembers anymore?!

This morning my joints are much achier than normal though. Makes me wonder if the brain fog and sheer exhaustion means I'm flaring again and the Pred just isn't kicking it, or what the hell is going on. Where is that damn Magic Pill already?!

Checking in

I can report that I'm noticing slightly less pain and stiffness as compared to being on the 5 mgs. a day, but I'm still in the exhaustion phase and it's gotten worse since my last posting. I have been so tired and so out of it lately that I can't even knit. I can't keep track of things and am starting to feel overwhelmed for the most part. I know it will pass, it usually does, it just sucks in the meantime.

The other symptoms I've posted about are still there (reflux stuff, nausea, sore throat) but I've also noticed my jaw burns at times--in the joints. It's like when you bite into a lemon and you get that weird sensation that you can feel in the muscles of your jaw. I have never had it actually be a part of an everyday thing, so I'm assuming it's from the meds.

I've still been able to keep the pain pills down to about 1/2 a day, which I think is really good. Granted, there are times during the day that I wish I could take one, yet I refrain. Feels like I'm "punishing" my body with all the drugs I'm taking in the meantime, so I prefer to "grin and bear it" as much as is humanely possible.

Upped the dosage

Yesterday was my first day of being on 10 mgs. of Prednisone instead of the 5 I had been on. I only needed to take half a Percocet in the late afternoon and am hoping it was because of the Pred, but not counting any chickens yet. I am definitely ready for a pain pill right now, yet I'm not going to take any until I'm really hating life. Of course I wouldn't be surprised if the pain factor is thanks to me having to scoop up dog poop and pick up dog toys/bones (plus move a heavy stepping stone) so that the yard guys could do their stuff. Had they not come a day early then DH could've done most of the heavy lifting tonight. Alas, that's not the case but life goes on.

I still have the sore throat and last night I noticed some reflux-like symptoms going on. Had a nasty taste in the back of my mouth/throat...like I was going to throw up...and felt nauseous. I'm assuming it's breakthrough reflux. I'll mention it to the rheumy but for now I can deal. Just so long as it doesn't get worse, that is. I'm a little worried about my hypoglycemia as it seemed to flare up yesterday which is kind of new for me. I have read the Pred can mess w/your blood sugar so I'll keep an eye on things and see if I can keep everything under control w/diet like I have in the past.

I'm still exhausted and hating it. I took a 1/4 of a Flexeril the other night to see if it would help me sleep better, however I woke up feeling even more tired. If I don't get my one cup of coffee a day I am screwed and even that doesn't help all that much. Seriously, the exhaustion sucks.

Day 5

I'm still not noticing much help in the pain dept. The past couple of days have been really tough for me. I did quite a bit both on Fri. and Sat., so today I am taking it as easy as possible. It is almost 4 p.m. and I am just getting ready to take my first half of a Percocet. I can only assume it's because I haven't been up and moving a lot.

Still no major side effects, thankfully. I'm doing my best to control the "munchies" by only eating when it's "time." And I'm also trying to eat as healthy as possible. Note the word "trying." I can't say that I eat healthy all the time, yet the effort is there.

Day 3

This morning marks the third day that I have been taking Prednisone. I can't say much has changed except that I get huge hunger jags ever so often. Last night I was eating like a pregnant woman. Not good for the waistline but at least it wasn't overtly unhealthy.

Yesterday was a crap day for me pain wise. I finally gave in and took half a Percocet around noon, which is way early for me. Usually I can stretch it out until around 4 p.m. or so, take a half of one, then take the other around 8 or 9. I even thought I'd be clever and take just the one half at 12, then wait until later to take the other half..like much later. I was in so much pain by about 3:30'ish that I would've taken a shot in the eyeball just to make it stop. I wish I knew what was setting me off so bad as today I am feeling very achy already and it's not even 10 a.m. We have two events to decorate but thankfully the term decorate is being used loosely here as one wedding is just renting the tiki bar from us while the other is just having me cover a few curtains w/chiffon (thank God!). My dad will be doing the tiki bar assembling but I'll be going down to Sunriver and working alone so that he can pick the kids up. I haven't taken any painkillers yet, however I have a feeling I will be before too long, unfortunately.

I had hoped that I would see improvement by now, but no such luck. I'm guessing it could be that given it's such a low dose I might not see any changes until I "up" the dosage. I just hope I don't have to up it too high.

The only "side effect" I've seen other than the hunger pangs has been a slightly sore throat. That could be from the weather changes too, but I didn't have it until I started taking the Prednisone so they may be related. Fingers crossed I start seeing improvement soon.

The eye verdict is...

Epi-Scleritis, once again. Good news though, given the alternatives. I am to let it run it's course and keep watching it. The opthamologist says that if it continues to flare then it's okay to self-treat unless anything changes (such as the pain is worse, for instance). However, if I go w/out a flare for say 6 months and then it comes back, I have to go back in right away.

I think the Prednisone may actually help this condition too. That would be fabulous! I am tired of telling people, "No, it's not pink eye." Or "No, I didn't injure my eye." Not that I blame them as it looks pretty nasty when it's angry.

Late night phone call

Last night while watching a DVR'd episode of Entourage, the phone rang. It was almost 9 p.m. I figured it was one of my friends and when I went to answer it I saw on the caller ID that it was none other than my rheumy. You could've knocked me over with a feather. I quickly told DH to pause the show and answered the phone. He apologized for calling so late. I was just damn glad he had called. My stomach did flip flops as he went through my test results worried that he was going to tell me that he couldn't help me. Instead he said that he believed something was going on--he just isn't sure what. Nevertheless, he has put me on Prednisone for two weeks to see how I do. Thankfully the dose is low (5 mgs. once a day for a week, then 10 mgs. once a day for a week) so I'm hoping to escape the side effects. Lord knows I don't need more hair growing in places that shouldn't have hair, or liver problems, or blood sugar problems, or, or...the list goes on.

The one thing that has me worried is that I asked him about my Leukopenia (low WBC and Lymphocyte counts) and my Alpha-1 being low. For the first concern he said he didn't know what to make of it. For the second he said he didn't know what Alpha-1 was. Scary? I don't know. I hope that he is as methodical as rumored to be and jumps on this shit and figures it out because I want to know. Granted, I'm really, really happy I am being treated and that is what is important. Yet I also want to be sure that we're not missing anything and it would be nice to have a diagnosis. For now I'll settle on trying something that could quite possibly make me feel better. I still have to take my Percocet as I thought I couldn't mix the Prednisone w/the Percocet and thus didn't take any tonight. BIG mistake. HUGE. While the Percocet does not stop, nor help, the inflammation it does take the edge off and makes the pain much more bearable. Without it my joints and muscles literally scream at me. Picture the worst flu you've ever had. One where you were sure your body would be turned inside out. Then take away the vomiting, high fever (a low one is okay), runny nose, watery eyes, or anything else that would say "Yep, that's the flu" but keep the pain. That's me. Not a good way to live. And I, a self-professed pill hater and who abhors the thought of being reliant on any type of drug to make me feel better, has given in. I'm not fighting it anymore. Not worth it.

Dr. B asked me to keep track of my symptoms over the upcoming two weeks. Should be easy enough.

I went ahead and sent off a request for my medical records from OHSU. We'll see what those have to say.

As a side note, I am taking Pepcid AC as a preventative for the Prednisone. The pharmacist warned me that it will be worse the NSAID's. SWEET! So long as the Pepcid works I'll do my best to pretend my stomach is not being ruined by yet another drug.