♥ “When we look back on some of our most challenging experiences, we admit that we wouldn’t trade what we gained from them for remaining the same as we were. Something within acknowledges that during those times when we are pressed against the ropes of life, we learn to become more generous, to forgive, to never give up on ourselves or others. We learn to regenerate, to rejuvenate, to surrender.” Michael Bernard Beckwith ♥
My new favorite quote. And essentially my life story thus far!
***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…
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.
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.
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!
So, I probably did too much going out to Hershey’s Park and all the shopping around the city (outside)…. but I ended up with bronchitis. And so I went to the ER (because there are NO Urgent Care clinics in Philly) Friday the 29th, to make a quick stop for antibiotics, Xray, etc. They told me my Xray was good, I had bronchitis (not to mention a cough that sounded like a SEAL). They ended up giving me a nebulizer breathing treatment, and a prescription for antibiotics and an inhaler.
The next day I felt a hundred times worse and since I had family in town, after Physical Therapy, I snuck a quick appointment into my primary care’s office. They snuck me right on in direct admittance to the hospital….. I practically had a room and a bed ready for me before I crossed the street to get there. So that was fun. I had a nice view of city hall out my window, and NO roommate!
Once they saw me (and heard my SEAL COUGH) they started me on 3 IV Antibiotics (Azithromycin, Vancomyacin, and Zosyn– in case anyone cares to know which) and pulled me off the Bactrum Antibioitic the ER had given me the day before. They also started me on nebulizer treatments every 4 or 5 hours, which was later changed to every 8 hours when they put me on a 24 hour masked 50% Oxygen cool mist humidifier. That was pretty much it the whole time I was there. Vital signs, pills for lung pain and coughing, other pills, respiratory therapist visits. The end. No, just kidding.Luckily I had given my sister and her family a big hug goodbye, because they were heading back home to sunny Florida that afternoon. Anyways, I had a room and a bed on the Med/Surg floor really quickly, but I don’t think I saw a doctor or my nurse for probably 3 or 4 hours. Strange.
Other than my bronchitis, they were concerned about two things. 1) A possible blood clot in my lower right calf- which had been super painfully cramped for a few days — that turned out fine, after a 3 hour ultrasound and all. But they told me to watch it, because it was a little swollen and I had tiny leg veins for clots to hide in. And apparently lupus gives you a higher for chance for blood clots. 2) My ‘abscess‘ thing on my stomach. It started out as a little white dot surrounded by a red circle like the size of a ‘big’ quarter, surrounded by a white circle. However by the time I was actually in the hospital it was a small black hole, surrounded by red skin, probably the size of a large tablespoon spoon. [Check out the photo on the left] And some of the parts in the ‘red zone’ were rock hard. Oh AND IT HURT LIKE THE DICKENS! The weird part was if you pressed on the side of my stomach, or way below the spot on my stomach, it still made me literally scream in pain–at the location of the red spot.
An infectious disease doctor came in, and touched it and stuff, and told me he thought it was a PHLEGMON. I asked if he could spell that, and he DREW me a picture!
So, here’s a picture of my re-draw that explains it a bit—>
I got to watch the whole thing, thanks to local anesthesia. It was crazy- he cut it open, maybe an inch wide, but he went deep. INCHES deep. . He cleaned it up and then reached in with his clamps and PULLED out gross, infected, interesting stuff. Not too much, but enough. It was rather amazing how he dug around in there so grotesquely His scissors were the clampy kind and he essentially reached in the hole he cut, and did this circle type thing feeling around in there under all the red stuff to make sure there was no more. And in the end it looked like a small stab wound, next to the ‘folliculitis’ spot that originated the infection. Then he didn’t stitch it or anything because he said it needs to drain and heal from the inside out- wouldn’t want to keep any more infection in there! So he bandaged it up with a simple piece of gauze.
I will make the two photos thumbnails in case you get grossed out. You can click them if you’d like to see bigger!!
——–
So, I’m pretty sure I ended the my last blog saying how soon I’d be back with information on my Cytoxin Chemotherapy treatment.
Ok, So lets start from the beginning I guess. But, fair-warning,- I am slightly medicated.
No, I didn’t die; Yes, it’s been over a week since I blogged! And I’ve been thinking about the poor blog every single day. Whether it was time one day or energy another, I just haven’t gotten around to doing it. BUT NOW, I’m back in the hospital and I have all the time in the world.
Wednesday (Dec 21)
I had my outpatient Cytoxin infusion Wednesday the 21st, four days before Christmas. All went well. Better than expected to be honest. I took one Phenergan (Rx nausea pill I had on hand). I got there early in the morning around 8am, registered, and it was through the same room in the hospital as the plasmapherisis treatments- where I already knew most of the nurses. Then I got a comfy reclining chair, IV fluids, and Zofran (nausea medication) all before the chemo was administered. The chemo took about 2 or 2.5 hours I’d say… and then they monitored me for maybe another 30 min. A very nice nurse, Ashley, was in there the entire time, monitoring me and we chatted a bit. And it was over.
Then I went home, took another Phenergan (in case I got nauseous) and slept a few hours until around dinner time. When I woke up I felt fine, I was bored, and wanted to go somewhere! So I called my mom up, and we convinced my dad we needed to go hang out at the casino because she had ‘free money’ vouchers. I didn’t think it would be so bad since I had a wheelchair to be pushed around in all night. It really wasn’t that bad either. I got tired out pretty early into the night and went and hung out at the sandwich shop, but my problem was loosing $100 my mom gave me in 20′s that I had in my lap as I went through the gift shop when I walked in. I even had security look for it with all their ’ahhmazing’ camera systems- but nope-poof it was gone. There went my first hour and fun of the night!! My parents ended up winning money, so it all worked out. But I was a bit bummed, ya know?
Pre-Holidays (Dec 22 -Dec 24?)
My mom and I pretty much spent way too much time and way too much money shopping for last minute Christmas gifts that we DEFINITELY needed…
Then my dad was soo kind to wheel me down to LOVE Park so I could get some warm “mulled wine” from the Christmas Village where vendors set up a little zone to buy fun things in. I absolutley love the city and history of Philadelphia.
Sunday (Dec 24th)
YEP! We unwrapped them on Christmas Eve! Luckily, Santa even got his presents there in time. We didn’t get our GIANT stockings full of more goodies and gift cards and stuff until Christmas day, but that’s kind of how our (new-ish) tradition goes. It started several years back with one present allowed to be opened before Christmas. Then as we got older (into our 20′s?) it kind of evolved into all the presents!!!! That way we get to sleep in really late on Christmas day, and enjoy more presents (stockings) when we do get up, we have a huge brunch, and just relax and enjoy the day (with all our new stuff!!!)
Monday (Dec 26th)
This year, my older sister (Michelle) was finally able to get time off from work, and was able to drive up from Florida to visit for the holidays and introduced us to her long-time boyfriend Rob, and his son, Kolby, who were both amazing young men. Unfortunately they were only able to stay until Friday… but we had a great time while they were here! We had our traditional “Christmas Dinner” on the night they arrived, followed by more present opening! Then we showed them around the city- including visit the Liberty Bell and Independence Hall, plus lots of other exciting tourist stuff while they were here!!
Tuesday (Dec 27th)
I had Physical Therapy and found out that my orthotic leg brace was arriving on Friday (Dec 30!!!!) OMG SoOoOooo excited!! I am so very ready to walk again even if I will look like a pink shade of Forrest Gump!!!
← This is it!!!! I think I’m in LOVE! ❤
From what I understand, it will let me bend my knee around 30 degrees forward and then when my foot/heel touch the ground, hydraulics lock my knee back into place, allowing my leg to push forward – aka – walk!!!! Hooray!In addition to my leg brace and P.T, my grandmother (Gran) was scheduled to arrive from Mississippi around dinnertime on Tuesday the 27th, but due to a series of ridiculous flight delays, she didn’t get in Philadlelphia until around 11pm, so she didn’t even get to seee Ron and Kolby until the next morning.
[Side note: I think I started developing a slight this day...?]
Wednedsday (Dec 28th)
We took the entire family to Hershey Park, PA. We did tons of fun fun candy stuff! I was in the wheelchair of course, but it actually helped us cut in line once or twice at the attractions! (OOPS— I was happy/sad about at that at the same time). We designed our owned candy bars, fillings, wrappers and all- and watched the process of them being made from start to finish- which was pretty neat! We did lots of other stuff, a 3D movie, a ride simulating a virtual tour showing how everything was done and made, shopping, got employee badges, rode the trolley to see Hershey’s original house he built, which was turned into an orphanage for boys. By the end of the day I was definitely pretty beat up feeling. But then we went out to eat at Houlihan’s Restaurant, which was delicious….
Thursday (Dec 29th)But that was pretty much the end of my excitement 
( Towards the end of the night I felt general malaise- sick, and was coughing a bit more, and heavier. The extreme drop in temperature and sharp increase in wind speeds probably didn”t help my lungs feel any better though.
Back to the real world. I went to Physical Therapy early (at 9am instead of 11am) so I could hang out with my family for a bit longer, but my dad took my Michelle, Rob, and Kolby out to South Philadelphia to get their famous ‘CHEESESTEAKS’ which were apparently delicious. And then they decided to take their own historic walk back to Center City (about 5 miles).
I was really starting to feel worse after P.T. sick wise, so my mom and I went to the ’Drexel Convienient Care Clinic.’ It’s pretty much like a tiny urgent care in the city. They fixed my mom up with some medication (Oh, BY THE WAY, she has shingles). But they told me they thought I had bronchitis and I needed to go to the ER for an XRay, etc. By the time that was all over, it was determined the doctor’s thought I had a strange abscess on my stomach, and bronchitis. They sent me home with a prescription for Bactrum (antibiotic), an albuterol inhaler, and liquid phenergan with codine (for cough).
Luckily, my dad took my sister and I out to walk out walking the city- so I didn’t ruin their day by being a BAHumBUG. We ended up getting home around the same time actually within a few minutes of each other- at that off time between dinner and lunch and we all went at ate at the local pub (best food ever-only half a block across the street from our front door). Then Gran and I went upstairs to go to sleep early/ I let Kolby hang out in my bed and watch movies with me have tickle fights etc until the adults got home from spending their last night hanging out at the local casino! Fun stuff.
Friday (Dec 30) — Sister leaves town//Hospitalization
The next day, feeling much worse, I made an appointment with my primary care doctor’s office, but unfortunately on such short notice it was a doctor I had not met. Sho direct admitted me to the hospital [of which you ^above^ can see my truly great view of historic city hall, right outside my hospital bedroom window!] . The doctor said my cough was awful, didn’t want the bronchitis to progress into pneumonia (with me being so susceptible via the lupus), and the spot on my stomach looked awful. Luckily, I had suspected this, and gave my sister and her family big hugs, kisses, and I love you’s before I headed off to the doctor’s office just in case. But they (my family) were able to do some shopping and more sightseeing before they left- so it wasn’t a bother that I was gone
Monday (1/2/2012) –TODAY
I am still in the hospital, day 4, going on 5. Hopefully I will be released tomorrow. My rheuumotologist and I think I am well enough to go home, but he also wants neurology and cardiology to
see me before I go. So it may end up being Wednesday…?
I will write another blog on my actual hospital stay (Dec 30 to Jan 0?) probably tomorrow. It’s not too exciting and eventful, but I took notes. In summary: I am currently still receiving 3 IV antibiotics to treat infection fromboth severe bronchitis (they said I sounded like a seal-boo) and also for the ‘phelgram’ (in the family of abscesses/folliculitis) on my stomach. They cut open my stomach and took out the infection, so that should be healing. In addition to pain meds and all my lupus meds, I’m getting nebulizer breathing treatments ever 8 hours and a 24 hour cool mist 50% Oxygen mask to moisten my lungs. Bottom line, I look pretty awesome. NOT.
I will definitely be writing the long(er) story of my hospital stay very soon. Be excited!!!
Otherwise, facebook me, whydontchtcha?? [ facebook.com/livelaughlovelupus ]
XoXo BeccaBoo
Challenges are what make life interesting; overcoming them is what makes life meaningful.
–Joshua J. Marine
