***I will add fun and exciting pictures, videos, and tags when I Get home this afternoon. Hopefully this should keep you entertained for now

Ok, So I don’t like the way blogs are so restrictive. I want to make a website. I have too much too talk about and hate jumbling it all into ONE page in a blog. It’s confusing and overwhelming. I’m going to do this regular kind of blog once more at least, and then see if I can figure out how to make a real, dynamic, simple, pretty WEB PAGE !!! I am going to try WEEBLY. Anyone know much? It seems like my best option. For exapmple, I want a recipes page, and I want a lupus vs exercise part, and I want a random other life event page… and I feel too restricted here!

Back to the LUPUS discusiion: I was in the hospital again for a lupus flare (stay #3 — Jan 26 through Feb 1). I think it was a week. This time  I stayed on the ‘Women’s floor.’    I asked them if there was a particular reason, and they said because I was a woman. Fair enough. As long as they didn’t think I was having any children. I know the steroids have done their part and all,  but gosh. haha

No, no  thing too productive happened during my stay, other than a LOT of tests, medications, exams, screenings, and three more treatments of plasmapheresis. I saw Dr. Huppert every day except Sat/Sun, where he sent ‘Chief of Medicine’ to check in on me and evaluate. So0o0o…

Why was I admitted??

Thursday night, I’m at the hairdresser, getting my hair highlighted (foiled) and I get a phone call FROM my Rheumatologist asking me if I could head to the hospital then to be admitted (@ like 5:30pm!). Apparently my mom had sent him an email, totally appropriate, saying how I had been swelling up very badly, getting excessively red rash-y and my lungs were hurting/I had a bit of shortness of breath.
My response to him was something to the effect of I had 50 pieces of aluminum foil sticking out of my head and could not be at the hospital until at least 7pm. He didn’t say a lot… just that he’d put in orders for me to have a bed ready there tonight and he’d see me first thing in the morning.

Here’s my stats upon intake:  99.4 temperature,  high blood pressure 144/101, slightly high pulse 118, and a pretty high pain level in the back of my hip and down my right leg.

They gave me my normal dosage of evening medicines in addition to a meager 2mg IV morphine.  (In case I haven’t mentioned, I have a ridiculously high tolerance to IV narcotics, and it makes me very angry and almost isn’t worth the frustration of bothering with dosages.) Oh, and I got an injection Salumedrol (more steroids).

Throughout the week, we discovered I was in fact in a ‘lupus flare’- not in remission YET. I had high ANA’s, low potassium, low WBC, etc.  I got another perma-cath installed (surgically) which was an absolutely awful experience. If I ever see that anesthesiologist again, I’d love to shove a huge tube through his chest wall into his heart while he’s awake and in pain. Then tell him it’s ok he won’t remember. WELL I remember. JERK. I told him I needed more medicine, but no no no- the person having the surgery (who has in fact had it before….) doesn’t know her body at ALL.     So I guess to shut me up, in the recovery room they gave me something to knock me out for about 4 hours. Yeah doc, thanks for the help. You’re fired in my book- wait until I get my medical records. You are going on my blacklist!

Anyways, throughout the stay- I was given three infusions of 1000mg Salumedrol steroids to try to control the lupus flare. I was given respiratory therapy (nebulizer treatments and advair a few times a day).

For the Transverse Myelitis (triggered by the flare) I recieved 3 treatments of plasmapheresis. But my FIBRENOGEN levels were too low (in the 70′s rather than the normal 200-300) so they spread the treatments out over about a week. My levels only had to get to 100 for them to do it, but it took a few days for me to get there. The third pheresis  that I got ended up being outpatient- they released me and let me come back two days later when my fibrenogens were alright. LUCKILY….they were 101! Woohoo, I beat the 100 mark.

I ended up doing the 3rd plasmapheresis ‘outpatient’ on Friday, so I couldn’t get my perma-cath port removed until Monday  in the surgeon’s  office. Too bad that plan didn’t work out.

The EMERGENCY Room Visit….

So, I’m getting ready Saturday morning, doing my hair, almost totally ready… and I go to put on my shirt and my port starts bleeding out through my tagaderm. Like, leaking out….by Monday I’d be toast.  So, Plan A- go get nails done with mom and paint pottery. Cancelled. Plan B- Why not go hang out at the hospital??? I mean, I’m starting to get recognized on a first name basis- in a Center City Philadelphia hospital. No big deal.

So, really they just have to make sure it’s sterile, pull in a surgeon, and he can pull out the catheter. Ohh… I got a video for you guys If your squirmish, maybe my mom talking about my grandmother being scalped the entire time will calm you down

That went really well. The doctor patched it up with some gause, gave me the standard keep it clean and dry speech, and said if it leaks too much to come back to the ER, but it might ooze a little. All done….. so I get up, get my pants on, my KAFO leg brace, move on to my bra- and all of a sudden my bandage area (top of right breast wall) became very warm. I looked down, and turned to my mom. I’m pretty sure I was concerned about getting my new bra OFF because my body was literally spilling blood. The blood started ballooning out the tegaderm  (clear bandage) over the gause. Eventually (which was all in probably 3 or 4 secs) I opened the curtain expecting the doctor to still be out there, and said “Uh- I think it’s a little more than oozing…. DOCTOR”

Some other doctor (student?) rushed in and was freaking out trying to control the bleeding. He didn’t know who I was and was apparently trying to discharge another patient, but he was nice and came in and applied pressure to my gushing wound. Ooops, emergency. Haha, nothing ever seems to go right for me. Turns out, my surgeon who pulled out the tube had already made his way somewhere else in the hospital. So 10-15 minutes later the surgeon comes back  in, maybe 2 minutes after the student doctor left and asked my mom to apply full pressure on the gause pads on my chest so he could go try to find a doctor. The surgeon said applying pressure to the wound just holds the blood in…. that that wasn’t helping anything. I was bleeding out of my JUGULAR…

So after 20 minutes of pressure on my jugular by the surgeon, it still bled. Then the surgeon told us to apply heavy  pressure there for 15 more minutes, patch it up, wait 15 more minutes, and then see if it bled. Finally I was in the clear and got to leave!!!

About Lupus sucking- I’m not even going to start with the stretch marks. That’s another story for another night…. but I’m telling it because gosh darnit, it is NOT cool… I am going to try to see a nutritionist. Because if I don’t get off these steroids soon, I am going to lose it- mentally….certainly not physically. Anything that goes into my body seems to stay in pounds.

Physical Therapy

So, being in the hospital, I had already been ‘off’ physical therapy for about a week and a half. Which is a bummer, because I like my 3x week of therapy. Makes me feel like I am aiding in my own recovery. I go in Monday, not feeling 100% , and she told me I should be discharged for a few weeks Then come back. No way! I told her how abotu I come see her next week. So I will go back to her Wednesday, after I see Dr. Huppert (my rhuemy) on Monday.

Oh, I also don’t think I wrote anything about my hospital roomie Judy coming to visit!  That all happened before the hospital visit luckily! Hopefully we get to visit again soon, and relax!