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.

More lab results

I picked up my bloodwork test results last week. Good news is that it's negative for Hepatitis. That was a concern given my liver enzymes have been wonky. More good news that doesn't seem like good news is that my hs-CRP level came back very elevated. It was right on the border of "above normal" and "high." I'm guessing that had that test been done on Sun. May 6th (the day after my marathon photo shoot) the levels would've been off the charts. My Alpha-1 is still very, very low. Not sure what's causing that. My SED rate came back elevated for me but within the normal range. This time it was 24 and anything under 26 is considered fine. Last time it was much, much lower. Again, had the tests been done sooner this might have been raised too.

In reading up on RA and Lupus I came across some interesting things. With Lupus it's not unusual to have Leukopenia (low WBC and Lymphocyte counts)--which I have. Of course, there is something called Felty's disease that is an incredibly rare complication of RA that causes the same thing. I have symptoms that can be tied to both RA and Lupus, of course, and I'm really wanting an answer now as I figure there is more than enough test results to form an educated guess here. I sat down this weekend and typed out all of my symptoms, my abnormal test results, "weird" abnormalities I've had in the past, and what have you. I plan to give this to any and all doctors I see from here on out so that maybe it will make it easier for them to connect the dots.

Of course this weekend we had a huge event to decorate and despite my dad, my husband, and even the banquet manager helping, I still felt like someone beat the ever lovin' shit outta me both that day and up until today. Because of this I called the rheumy yesterday in hopes that he could maybe start me on some sort of a treatment for me to be able to make it until my next appt. which isn't until the middle of June. I have at least 5 events between now and my appt.--I am scared. Like seriously scared. Especially for my June 9th weekend. We have to decorate on the 8th, finish up on the 9th, then I go shoot a wedding on the 9th, tear down the first wedding on the 10th, and decorate a wedding on the 10th, then tear down that second wedding on the 11th. Yeah, I'm stupid and insane. The rheumy's office has yet to return my phone call. Surprised? I'm not.

My left eye is flared once again. Started last night. I am leaving right now for an eye appt. to get it checked and make sure it's still the epi-scleritis and nothing more sinister. I'll update later.

Rheumy woes

I have held off blogging about my appt. w/the rheumatologist as it really upset me. Before the meeting I had a good idea that I was going to be told they had found nothing. I had all the test results and knew that my liver enzymes were elevated, and that the radiologist hadn't thought I had AS, but I was also still having pain and my eyes have continued to flare up.

The hubby came with and met me at the doc's office. The nurse called me back, went over a few things with me, took my blood pressure and found out that it was high (which is incredibly rare for me as I always have below normal blood pressure). I can't say that I was any more or less stressed than I normally am for a doctor's appt. and in fact seemed more resigned than anything. Hey, call me a pessimist but I had a gut feeling.

Dr. B breezed in and had me come sit on the really uncomfortable, hard, plastic chair next to his computer. Why they have chairs like that in an arthritis clinic I will never understand. Anyways. He proceeds to fly through my test results, my MRI images, and xrays. Seriously, I think he spent all of 2 secs. looking at each one and that is no exaggeration. This was not going to go well. During all of this he informed me that my SI joints were completely normal (despite six other doctors and radiologists saying otherwise) and that there was really no reason to keep seeing him. I then asked about my pinky and knees swelling up and the pain from them.

"Well you didn't tell me about that!" he said. Yeah I did. At our first meeting. I circled and colored in all the spots that had been giving me pain/swelling/redness. You didn't look at it. But of course it was my fault.

He has me undress and change into a gown. All the while I'm railing to my husband about how this is stupid. Obviously the rheumy thinks it's all in my head, nothing is wrong with me, the typical woe-is-me kinda shit. I'm pissed at this point. Earlier the rheumy had compared the fact that I said my low back DID indeed get inflamed and feel hot to a mother who feels her child's head and says, "Oh, little Jimmy has a fever! We need to take him to the doctor." Are you f'in kidding me? I am not that type of mom. Never have been. I told the doc this. Did it matter? No. Remember, he's smarter than me...and I'm a woman.

I crawl up onto the exam table and wait. I'm upset and poor hubby knows this. He knows that I am shutting down and he hates this. I hate this. It is what it is. Dr. B comes back in and I briefly discuss my SI joints "popping" and "cracking" to which he tells me that it's impossible. Sorry dude...there's some snap, crackle, and pop stuff happening back there--so it's not impossible. Finally he relents and informs me that it may be the ligaments. Whatever. Just don't treat me as if I don't know my own body. Then he starts giving me the once over. Again, he spends just a few seconds manipulating my joints, pushing them, and pulling them, and not seeming to take notice when I wince in pain, or show obvious displeasure. At one point he pushed on my right side, somewhat under my ribcage, and told me to breath. That was tough to do. The left hurt as well. He said, "oh" or something to that effect...like he felt something...but didn't elaborate. He asked if I had ever had my liver enzymes come back elevated before and I told him I hadn't.

At this point I feel dejected and I tell the doctor this. He says I'm insulting him when I say that I don't understand what the point is of continuing to look for something if all my other tests have come back fine--I'm just waiting for him to tell me it's all in my head. "I'm not a confrontational kind of person," he says. No shit? Me either. But you've pushed me, and your stupid colleagues that treat me like I'm an idiot have pushed me, so now you feel my rath. I snapped. Nothing freakish, no yelling, just saying how I felt. And I cried. If the man had just said, "Look, obviously something is going on because some of your test results have come back 'off' and your eyes keep flaring up, plus you have other symptoms that aren't normal. We're gonna figure this out," then everything would've been fine and I never would've broken down. He didn't do that though. He just kept insinuating that every other person/doctor/therapist that had told me something he disagreed with was wrong. Dr. B--end all be all of rheumatology.

In the end he ordered an assload of tests. I was really pissed when he asked me, "Has anyone checked for RA or Lupus with you?" Anyone as in YOU--the guy paid to do this shit? The guy who has already seen me twice, ordered a ton of tests, and yet NEVER checked for some obvious stuff? No. No they haven't. I left the office with an appt. scheduled for another frickin' 5 wks. away, went next door, waited forever, hubby had to go back to work, and then had about 10 tubes of blood drawn. They made me drink orange juice before I left for fear that I would get lightheaded due to the amount they drained from me.

The results are supposed to be back in a week or so. Once again I'll head over to the hospital to pick them up and see if I can make sense of them.

As a side note I found a condition called Sacroiliac Joint Dysfunction which matches my symptoms as far as that is concerned. So who knows...maybe it is a ligament laxity issue for that problem. Either way it sucks and it hurts and it seems like more is going on as well. And yet I wait some more.

Gettin' too old for this

Yesterday I did a marathon shoot that was incredibly fun but afterwards made me feel as if someone beat me with a baseball bat. I could barely sleep last night because my SI joints, pelvis, low back, and both knees were screaming at me. To say it sucked would not quite describe the situation well enough. Today I woke up still in a ton of pain and I have been moving slow all day. My left knee is swollen and discolored--this is a first. It has been "crunching" for awhile now and the achiness has been getting worse so I guess I shouldn't be surprised. One more joint that is acting up. :/

My left eye (and I guess the right too, just not as bad) has flared up yet again. I think that makes 3 times in a month or so. The pain isn't as severe as last time (and even that pain wasn't horrendous) but they have the pressure thing going, redness/pinkness, and generally I just want to put ice or heat on them at all times. Makes it tough to get things done around here. :)

I will say the shoot was worth it though. I hadn't had that much fun in a long time.

Biggest waste of money, ever.

As per Dr. A's orders to follow up with my family doc regarding the pelvic varices, I went in to see Dr. R on Tues. Paid my $25 copay, waited, got called back, got weighed, waited some more, Dr. R came in, said it was probably nothing to worry about but she would call my old Gyn and see what he thought, looked over some of the chart notes from Dr. B, and said she'd be in touch. $25 for roughly 5-10 mins. of time?! That is so not right.

Don't get me wrong. I like Dr. R a lot. And I did like hearing a little bit about what Dr. B has had in his noggin from that first visit (and never shared with me), but that visit left me feeling like I should've gotten a refund. I told my dad later that they should have a new rule...if you spend less than 15 mins. with the doc, and you get no diagnosis or treatment, then you get your copay back. Seems fair enough.

My eyes seem to be back to normal. We'll see (pun intended) how long that lasts.

Pain-wise I've had a shitty day today. Both the right and left SI joints have taken turns screaming at me and I feel bruised again. Course we had rain, hail, snow, and sun all in a span of about 8 hours so that might have had something to do with it.