Check out my super awesome new Iphone case!!! I am in love with it… and got it from the (five) dollar store!!!
That’s all for tonight, because in the morning the packers pack up all of my things to be moved to Denver. So I probably won’t be posting again until next week, but I am feeling healthy and am ready to get it over with! 
Wish me luck everyone! See ya on the other side. xoxo
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
Quick update of stuff that’s going on…
Yesterday, I got health insurance for 3 more years (that’s a PLUS!) since mine was going to run out at the this month/year. I got Tricare Prime for really cheap since my dad is Retired Military, so we drove to Fort Dixx Military Base IN New Jersey to get all that done. Then immediately after that I went to my first appointment with a ‘Psychologist’… haha. Let’s just say I will be looking up some new one’s through my insurance ASAP. AND researching them online thoroughly. Talk about unconventional. She might have a PhD, which is impressive… but I think she lost a few nuts and bollts along the past 40 years. And then ended up with her office in what seemed to be an old bathroom (with just the sink left) and two couches. Her cell phone was plugged in on the floor, along with a bunch of other random junk next to it….. I’m going to give her one more try next Thursday, but umm- I think I will be moving on .
From there I got home,my mom and I drove to the Cherry Hills Mall (in New Jersey- like 20 min away) and pretty much spent like 6 hours shopping. It was kind of fun, but it took soo long. Then somewhere between Macy’s and Bed Bath and Beyone I realized my body felt like it hit a brick at wall at 50 mph and I all I wanted to do was lay down!!! Then my mother and I HAD to get something to eat before we headed home because we were starving! So we went to a place called Houlihans… which I would kinda relate to a TGIFridays.
It was delicious, other than the fact we got pretty much all fried appetizers but I was so tired, I could barely move so any food was good. It was a strange because I haven’t been this tired since before my fall/diagnosis. It was definitely a familiar feeling,e like there’s a few dictionaries on me right now (hehe for those of you who read some of my original posts).
Oh, and wanna see the drink I ordered at this restaurant??? I’m not really drinking alcohol (with the lupus I don’t want to hurt my body any more than it is), but I guess I should have read the description better. It was DELICIOUS, but I could only drink like an inch or two down into the drink. It seemed to be never ending! Check it out —->
Anyways, that was it for yesterday. I was soo exhausted I went to sleep and didn’t even take any ambien! WOW.
Today I’m going to Physical Therapy, then the Rheumatologist!!! YAY. I am excited to meet with him OUTSIDE the hospital setting. I am not sure what to expect for the first appointment, but I will for sure give an update on it later on.
I think I am just now starting to cope with the fact that I actually have Lupus, a lifetime Chronic Autoimmune Disease. And a serious case of it. From what I can tell, when they are planning from the initial diagnosis to start/continue Chemotherapy and 80mg of Presnisone (immunosuppresant steroids) for 6 months… that classifies your disease as serious
Now, when I say I’m coping, I’m not crying about it or getting depressed or anything like that. I believe I am just getting over the initial semi-ignorant shock phase. The past week has been pretty busy for me… and it really showed me how different my life is now, than it was just one month ago. Everything is different. Hopefully I make a strong recovery, but I am no longer independent. I am not dependent, but I am not at the level of complete independence I had and loved. I feel a little guilty for the inconvenience I’m putting on my family, but I don’t know what I’d ever do without them in this situation. And my dad, whom luckily is retired, has essentially set his life on hold for me. I just hate feeling like a burden. I’m 23, I was just about to start nursing school, and POOF. Everything changed in a literal blink of an eye. Anyone relate? But ANYWAYS, onto some other stuff.
I had an appointment with my primary care doctor earlier this week. Poor lady, I’m fairly new to Philadelphia, so I’ve only seen/met her once before. Then I made this hospital follow-up appointment with her, show up with my dad (because out of nescesity he goes everywhere with me now) and when she asks what the visit is for… I say “WELL, I know last month I was relatively healthy when I saw you, but…. I just got out of a 16 day stay on the Neurology floor in the hospital, I have LUPUS, Transverse Myelitis, a lesion on my spinal cord and I cannot currently use my right leg. Here’s my medication list- it’s about 30 pills a day, and the hospital told me I need some additional meds but that I need to see you- my primary care doctor- to get the prescriptions.” I think her jaw dropped open. She told me she was sorry…. which is comforting and all, but I felt more sorry for most likely completely surprising and overwhelming her. At the end of the appointment I think she was holding back from giving me a hug…
While I was there, I think I got a picture of my hands with a mild case of ”Raynaud’s phenomenon”
She also prescribed be a benzodiazapine (Klonopin) to take up to 3x day. It’s similar to xanax/valium I believe.
They don’t make me feel loopy, but they certainly do take away some of the absolutely overwhelming body crushing anxiousness I have been experiencing at somewhat random times, and of course stressful times. That was a neccessity- I think it’s from the massive steroid dosage I am on- perhaps combined with everything else going on in general- but I have been soo anxious, in a nit-picky way. It’s like I lost control of my leg, and therefore I feel the need to overcompensate by controlling everything else- which is difficult in itself. It’s like a crazy hectic circle I’m running in. But- point being, the little green pills help. AND she gave me ambien, which helps me get to sleep. I never really had a problem falling asleep, but I guess again because of the meds, I don’t really fall asleep at night. She also told me I need to begin monitoring my “fasting” blood sugar in the mornings to make sure my kidneys are handling all these drugs alright, and I don’t get diabetes. Pro: I’m a gadget nerd and I got an awesome blood-glucose monitor that plugs into the computer via USB and logs my info Con: No more juices-orange juice, cranberry juice, apple juice, none of it anymore I basically used to live off of orange juice. So I’m adapting to that.
Oh, and I had my first physical therapy appointment (Evaluation) on Friday. One good thing about living in the city- the rehab center is so close my dad just pushes me down there in my wheelchair in about a 5-10 minute walk. The P.T. said I have ‘clonus’ in my foot, ankle, and knee, but my hip is already strong and on the road to recovery. Iwill need to be fitted into a brace that supports my ankle and all the way up to my knee. It will be molded to my leg and sent off to be made I guess. She said it will have metal around the joints- and it will enable me to WALK!!! I can’t wait to see it. She also said I have a strong chance of recovery because I have strong muscle tone and willpower So I will be going to P.T. 3x week (Mon, Wed, Fri) at 11am until March. I start the actual ‘therapy’ tomorrow and I am SO excited. I’m about to officially be on the road to RECOVERY! (for this current issue at least…)I have another appointment with her in early January a few hours after I see my neurologist for my first post-hospital check up. So that should be an interesting day of doctor visits.
Also, I have a very important appointment coming up with my rheumatologist (whom I got so incredibly lucky to receive as my doctor in this city) on the 16th of December. After that appointment I should be able to get a handicapped parking permit, my disability coverage, and some sort of a long-term treatment plan…I think??. His name is Dr. Huppert. He is so well educated in many illnesses, but especially Lupus- and he says my case is ‘special.’ I believe he means unique, in the way my symptoms presented? But he wants me as a patient, to understand my case of lupus, and hopefully help me as much as possible. He told me my treatment plan he’s giving me is unconventional, very harsh, but necessary-if I want to walk again. I am counting down the days to that appointment. (Only 4 more!) So, a big blog update will come after that I suppose. Weird, I never thought I would be so excited and full of anticipation to go to a doctor’s appointment.
I’ll give an exciting therapy update on here tomorrow.
So yesterday my mom and I went Christmas shopping. Holey gosh darn gamoley. It was crazy. First off, in a wheelchair it is a little difficult to get around stores, people, etc…. but there were so so many people. That was my first experience trying to get around in a crowd in my chair. It ended up going well, we got lots and lots of stuff at this amazing outlet mall an hour north of Philly. We spent way too much money but got oh so much wonderful stuff. Retail therapy at it’s best. The wheelchair comes in very handy as a human shopping cart
Today I hung out with my mom and one of her coworkers, who is just a bit older than me…and we explored Philly. (Sounds like it would be weird but it wasn’t at all- she’s super nice and we got along GREAT). Anyways, she’s from Boston so we showed her around Philly a bit…We started in the historic Macy’s in Center City- where I got the most adorably amazing pink Coach watch!!! Then we walked around (I rode in the chair of course) and we had a lovely day strolling through the city- went to ‘Christmas Town’? which is set up in LOVE Park- and had some WARM mulled wine. YUMM YUMMM YUMM. We just did lots of little local vendor shopping- jewelry and such. And we ended the night at my favorite sushi restaurant in the entire city! It was a very good day And I made a new friend…. my mom’s coworker– Erin. 
Well…. it is 3:30 am again. I guess I should take my ambien and go to sleep so I make it to therapy in the morning!!!! Does anyone else get excited to go to PT? I’m just soo ready for my leg to WORK!!!
—–
Oh- and I just started reading a book about Lupus- called ”How can you NOT Laugh at a Time like This? – Reclaim your health with humor, creativity, and grit”. By Carla Ulbrich. So far so good. The title alone reminds me of ME, so it’s gotta be good right? Has anyone read it??
I’d love to hear everyone’s thoughts on some good books, routines, coping, ANYTHING!
Goodnight everyone! Thanks for reading
XoXo – Becca
Wow. It’s 3:30am and I should be fast asleep, but I stayed up to take my two antibiotics scheduled to be taken at 2 am… and really I am still up because this stupid blog. Just kidding, it’s not stupid- just extraordinarily frustrating. All I wanted to do is get a cute, unique theme different than most peoples’ and the WordPress site has given nothing but trouble.
If anyone knows how to upload a blog (from an outside .zip file) onto WP, please please let me know! I think I might have spent literally like 5 or 6 hours trying to figure it out and have essentially gotten nowhere other than I paid to register my domain name http://melivingwithlupus.com . Woohoo….
While I”m ranting, I might as well tell you about my lovely day. I decided to take up this new hobby of COUPONING. Not just because of that new show, I have always liked coupons for some reason, but the new show made me want to go all out and try it. So I did… while I am still crippled in my right leg, riding one of those awkward electronic shopping carts, following my poor dad around the store as I sorted through all my envelopes of coupons and what was on my list… all while we were in an overcrowded Philly grocery store that I decided to try out to see if it was better than any of the other crappy grocery stores in the city. My dad restrained his frustration very well, but I was stressed out too- due to everything culminating on me, and slowly overwhelming me until I felt like I almost had a nervous breakdown as soon as I got back in the car. Hopefully all the anxiety was from the massive amount of pills the doctors have me on, and hopefully they can put me on another one (lol, yes another) for occasional anxiety. It wasn’t like a panic attack- it was more like a whirlwind of a tornado was spinning around me… and then my lips went numb. Not sure if that’s normal or not, but it was weird.
Early tomorrow afternoon I have a follow-up/update that btw I have lupus appointment with my primary care doctor. Hopefully she can give me something to calm my nerves for situations like that. And/or hopefully I will just get better at dealing with things in a different way. This is definitely a learning process- that it seems like you find out piece by piece how it actually affects you. the over-crowded store I didn’t know my way around, sorting through coupons, and trying not frustrate my poor father who had to tag along the whole time- made me a little anxious! Check it out at the end of the near 3 hour shopping trip… this is how I felt as she was scanning all my coupons at the end. This is the face of hope- hope that all that damn work saved some money!!! (Which it did). But next time I will try a little different of a technique. Hopefully things will be able to move faster, and with any luck I’ll be walking! Even though my first Physical Therapy appointment isn’t until FRIDAY.
Anywhoo…
We will see what the doctor says tomorrow. I suspect she will recommend a therapist, which is an idea I have never been fond of. But for some reason, now it seems like a decent idea. I’m going to need a bariatric surgeon pretty soon too if they don’t get me off this 80mg of predinsone per day. Ah it”s like my stomach just doesn’t have a stop button.
Well, hopefully tomorrow will be a better day. I plan on going to the doctor, reading some of my Stephen King book about the Kennedy assassination to relax, and then possibly screwing around attempting to install a prettier theme on here!!
Tomorrow will be a promising day, I’m sure of it
XoXo Becca
Today was a good day I felt like a real person. I got my medications on schedule- I think. I’m healing well in my perma-cath port wound. My head wound however, from the initial fall,seems to be getting more infected since they cut it open right before they discharged me at the hospital. But, I will watch it and see what happens.Hopefully it will heal up a bit overnight, and I won’t have to go back to the doctor to have it poked at more :/
Anywwhooo- 
So, today I went out into the world!!! It feels like it has been forever. My dad drove me around everywhere, which I am thankful for…but I like to be independent…and DRIVE! So it was just a little stressful
First, I went to my office to turn in some paperwork about my leave of absence, and disability pay. Sadly I only made it to the front door with my walker before my arms were on fire from pushing myself around. So, I sat on the walker and my dad pushed me the rest of the way. It worked, but it was comical.
Then we went to Target!!! Ah, I missed shopping while I was sick. I rode the electric cart thing, which was slow, but it worked great. I got lots of stuff and had some great RETAIL THERAPY!
Then we got home and my mom had bought me a wheelchair!!! I can honestly say, I never thought I would be excited to come home to my own wheelchair…but it is an absolute necessity in my life right now to get around until I regain my strength in my leg.
So then, we walked (I rode in my wheelchair!) down the street to my favorite sushi restaurant, Kansai. Yum Yum.
Today was a good day.
For the rest of the night, I think I will just do some research on SLE Lupus and try to learn more about the new direction my life is going to head. I want to look into dieting, and lifestyle changes I should be making. If anyone knows/recommends any great lupus support or information sites, please let me know!!!
