Countdown

T-minus 1 day, 12 hours and counting until I get holes punched into Hannibal Oliver. I talked to a tech at the hospital yesterday and he informed me I would not be having a trans jugular biopsy (he was shocked I even knew what that was), would be getting good drugs, and would be able to sit up (and even pee if need be) in the recovery room. I may actually get some oh-so-tasty hospital food. Now what more could a girl ask for?! Ryan will be with me the whole time. The kids will be at my dad's, then he'll return them when I get settled back in. That way they can help me out as need be, which shouldn't be much.

I thought for sure I was going to die this past weekend. Between my incredibly physically demanding Fri.-Sun. schedule and the stress that it all brought, I also woke up Sat. morning around 4:00 a.m. having an apparent panic attack. It had been so long since I had one that I thought something else must've been horribly wrong. My heart was racing, I felt tingly and like I was on fire, and was convinced I would end up in the ER. I did my best to stay calm and eventually fell back to sleep. When I mentioned this to my dad that day he said it sounded like a panic attack and wasn't surprised I'd had one given all that we were doing work-wise.

Going out of order here--I also had a hideous migraine of sorts on Fri. while decorating. When I sneezed it felt like my head was going to break open. Not fun at all. My dad actually got worried. Said I should mention it to my doctors. This isn't the first time, however I was able to knock it out with one Advil. Shocked the hell out of me! I should've known it was coming as I had a bad pain behind my right eye and that particular headache seems to get me back there as well. Instead of being in the front, it's all located towards the base of my skull, more so on the right side than the left, and evil. My right eye has been a little "flarey" as of late too.

On Sun. I hit a wall. Big, brick, and not moving. I took a nap Sun. day after we finished working and did lunch. Then that night I was in bed around 10 p.m. and slept until after 8 a.m. I took a little doze on Mon. and was actually up until after 11 p.m. because we watched a movie. I've done nothing but want to sleep since this weekend. I also had a bout of nausea that was worse than any I've had thus far. I was so sure that my dinner wasn't going to stay put that I didn't venture far from the bathroom.

My throat is still hurting at various degrees. I'll be mentioning it to my GI people when I see them next week. My guess is that I have an ulcer or am getting one or just have really bad reflux. This stuff sucks.

Still kickin'

Today will be the first day I up the Sulfasalazine from one a day to two a day. I'm hoping I see better results soon as I'm about half to 3/4 of the way through my Percocet and I don't know if my ortho will give me anymore or not. And really, I'd LOVE to be off of them even if it is just one a day. Course as I say this I know that the Sulfasalazine isn't great for my liver either. Maybe worse? Not sure. In a perfect world I wouldn't need any drugs...but this isn't a perfect world.

Physically I feel the same. Exhausted, nauseous at times, bloated, and my legs still ache insanely bad. Here's my enlarged belly:




















Maternity clothes time anyone?? You can see how that far side (what looks like my left but is actually my right as this was taken in a mirror) sticks out more than the other. Hello liver!!

I can't say I'm looking forward to next Monday. I already read Harry Potter and the Deathly Hallows. Finished it in two days. Didn't want to but couldn't put it down. I'll have to find something else to read/watch for that day. Ah well...

My left eye flared up yesterday. Looked very ugly and angry. It's been awhile since the last flare so I was kind of surprised to see it red again.

I also haven't set up an appt. with a pulmonologist yet but I'm working on it. Sometimes I think my breathing issues when I'm just laying around (shortness of breath for instance) comes from my liver being enlarged. Other times I wonder if it might be due to Alpha-1 Lung disease. We'll see.

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.

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.