Tag Archive | chemotherapy

One year, anniversary of diagnosis Nov. 14, soon after I started my blog.

Nov29

More than an anniversary, an accomplisment, and a year of hardships and triumphs, all interwoven within each other.

You never know what the future holds…

This ‘award’ Inspires me to keep pushing, keep writing, and keep living 1000%!

I got through the worst year of my life, so now I’m out to make the best years of my life come true. Struggles or no struggle, I’ve seen where I’ve come from and where I’ve been. Now it’s up to me to make the best of whatever it is that may come my way in the future.

Now that it has officially been one year since my dramatic paralysis and ultimate diagnosis of SLE Lupus, and various other issues, I have so much to look back upon, and be thankful for what I have NOW… When I think I am feeling poorly somedays (which inevitably happens with Lupus)- all I need to do is close my eyes and think of what I was doing at this time last year. My answer usually comes up as things like ‘Hospital Thanksgiving Dinner‘ <— not recommended.  Or pretty soon, it will be a year since my first chemotherapy treatment. Or plasmapheresis. Or my annual bronchitis. Or some general other hospital stay, or surgery.  On my ‘bad days’ now, I can look forward to the good ones to come- compared to the seemingly less hopeful days of my past year.   :)

Wish me luck… I think this year is going to be a great one. I’m going to get back into shape- gently. And try to have a happy mind and body! <3  I suppose those could be some sort of early New Year’s Resolution…? Perhaps!  Lots of thinking to do.

Ok, goodnight all!!! And Happy Holidays- more specifically Chrismahanakwanzaka!

I’ll keep in touch :) And you do the same… please! I love to hear feedback and know that someone out there is reading this. I hope it helps not just me as an emotional outlet, but others as a personal information source.

Rebecca xoxo

Lupus- [I'm] Stronger than ever!

Oct2

Update!!!!

Right now, I feel as healthy as I have EVER been. No I am not ‘normal’ and never will be. But who want’s to be normal anyways?!  Yes, I have regular visits to the Rheumatologist, along with a handful of other doctors (internal medicine, orthopedics, etc), and I get tired of going back and forth- but you know what- they keep me HEALTHY. I feel a lot better now than I ever did on Chemotherapy and Plasmapherisis.

For those that are curious, here’s my medicine update: I am on Cymbalta (non narcotic miracle drug for body pain AND anxiety), Cellcept (an organ donor recipient anti-rejection medication- because my body’s cells fight against themselves.), a lower dose of Prednisone (7.5mg down from 80!) and a few different vitamin supplements, pain, and sleeping medications. That’s it. It’s about half of what I was on when I last posted in May! It seems like a lot of to some people, but it keeps me healthy. I feel great. My blood work is great. I have not been to the ER or hospitalized since July! That means I went an entire two months without lying in a hospital bed. THAT is a big step.

So, I feel good. I feel great. I still have some hard days, and I’m sure I will have many more to come. But I’m living in the present- and right now it feels good.

Over the summer, I got a job working for a real-estate company in the Marketing department.

Image

View from my office desk!

It’s a growing company, I built most of the website, made the design and branding, and feel like I actually made a difference for the company. I must admit- I think getting out of the house and having something to do, to keep you busy, is important in the health of your mind.

I also broke my foot. I’m sure it’s related to the lupus or the medications somehow, but that didn’t stop me. I went to New York for 8 days (for my job) and walked around with my broken foot ‘air boot’/cast until I physically wore it out. I guess I pushed a little too hard with it. Story of my life!  But my foot is better now, 7 weeks later!

All good news :)

On a separate note, I signed up for Aflac last week. I was pretty excited, that even with a part-time job, and Lupus, they would still let me enroll in the ‘hospitalization plan’ where they pay you several hundreds of dollars per night in the hospital. A day or so later, the representative emailed me with sincere apologies. She said that in the past year the plans have changed, and because of my diagnosis of Systemic Lupus, I could not enroll. I was saddened and hit rather hard by this fact. My exact thoughts were, “Wow, I guess they realized how serious Lupus really is.”  But I quickly turned my frown upside down :) I realized that I have gotten along all this time without hospital coverage from Aflac, and frankly it was greedy of me to want to sign up…knowing inevitably I will be hospitalized at some point in the future…and ream the ‘benefits.’ So why should I need that coverage anyways? Why should I want to profit off of my own pain? I DON’T.  When I realized that, I realized something within me had changed. My mindset, my world view.  I want to be me for me. Not me, the girl with lupus. Nothing can hold me back! (Hopefully!! haha)

Anyways, I will continue blogging, while I’m feeling well, and when I get to feeling sick again- whenever that may be. Hopefully the following posts aren’t as scatter-brained as this one, but it’s been a while since I wrote really. So I had/have a lot of catching up to do!

Moral of the story today really goes back to the quote I posted the other day. Obviously I would rather not be sick, I’d rather run marathons, be skinny again, and lots of other things. But I wouldn’t trade it for anything. The respect for life, people, and the world around me, are completely worth all the heartache and pain I’ve been through recently. I’ve learned who my friends are, and who they AREN’T. True friends are the ones that stick around when things get tough. And I am so lucky to have those kinds of people in my life.

It has been 10 1/2 months since my diagnosis, and it already feels like a LIFETIME ago. Just remember, you never know what’s coming around the corner… so make sure you are happy with where you are and what you are doing, and if you’re not- then fix it! :) Please.

ImageSo I will end my most random but wonderful blog post, with another quote. “I may not have ended up where I intended going, but I think I’ve ended up where I needed to be.” -Douglas Adams

So true.

Talk to you soon <3

xoxo Becca

My Symptoms (PHOTOS)

Apr12

MRSA- The reason I will never have a roomie in the hospital again :)

This link is posted in the toolbar above listed under the “About me (and my lupus)” link.

>>> My Symptoms (PHOTOS). <<<

In case you missed this link in the toolbar above…. I’ll be adding more photos soon. Now, I need some sleep!

I’m Still Here!!!

Apr7
DateSATURDAY, APRIL 7, 2012 AT 6:47PM

I’m still here!!! By that, I mean I’m still in Philadelphia. Looks like we aren’t leaving for Denver until the end of the month. Also, I’m still here in the blogging world. I apologize for my absence. I have mostly been sleeping. Since I got the chemotherapy last (in mid March) I have been terribly fatigued. I guess that is part of life with lupus. “Chronic fatigue syndrome.”  The past few days I have actually been awake for most of the day though. So hopefully that bout of fatigue is over. I believe today is the first day I will have gone without a nap in at least a month! Sad, but also exciting.

Meanwhile, a lot has been going on. As you know, I live with my parents right now in Philly. They are moving to Denver for my mother’s job- my mom actually moved out there a few weeks ago. My dad and I are stayinig out here until we get packed up- in about two weeks. They already found a house in Denver and close on it at the end of the month! It’s pretty nice, I’m excited though to customize my bedroom and stuff.

It’s hard to believe SUCH A BIOHAZARD that has to be handled with such carefulness, is what they chose to put in my body: 

But good news…On the subject of LUPUS… I am officially finished with chemotherapy!!! Now I am on a medication called CELLCEPT. Which interestingly enough is an organ transplant anti-rejection drug.  “It works by weakening the body’s immune system so it will not attack and reject the transplanted organ.” In my case, the ‘transplanted organ’ it’s trying to save is my WHOLE BODY. Because the very nature of my disease is that my immune system IS attacking my (good) organs. I’m only about a week into it, but it seems to be working well so far.

I also started a medicine called Cymbalta. It is 1) for anxiety, and 2) it treats my kind of pain!!! (i.e. bone, muscle, and osteoarthritis pain!) The good part is that it’s a non-narcotic that works by “stops the movement of pain signals in the brain.” I’ve been on it for a few weeks and so far- it’s generally working better than the morphine! So now that I’m out of my sleeping spell, I think things are going pretty well for me.

I have one last Philadelphia appointment with my neurologist and one with my rheumatologist next week… then I’ll have to find the same in Denver. I think I already found a set of rheumy’s in Denver at University of Colorado Hospital. Luckily my rheumatologist here offered to talk to a doctor I found in Denver. I say ‘luckily,’ because I ordered my medical records from Hannemahn Hospital just since November… and they came in a box in the mail. The stack of paper is literally 2 feet tall. I think the doctors I hand that to might get a little frustrated/ or just laugh at me. Anyways, I’m feeling pretty confident that it will work out and I will be in good hands (not to mention at one of the leading lupus research hospitals!)

I think I may have my dad take me out to my favorite sushi restaurant tonight… and that’ll be out Easter celebration. Haha. Sounds like a good excuse to eat some sushi to me!

I plan on uploading a bunch of pictures soon, hopefully in the next few days I’ll be adding stuff! So be sure to check it out! For now, I’m going to check on some sushi!   Happy Easter!

Where Am I Right Now?

Mar19
DateMONDAY, MARCH 19, 2012 AT 2:42AM

Such a multi-faceted question. Right now I am in bed. In Philadelphia, PA. I haven’t gotten out of bed since my chemotherapy treatment on Thursday morning (3/15)…other than to get a drink so I could take more medicine, go to the bathroom, or today- make a meal. For the first time since Thursday- I went downstairs and cooked up some macaroni all by myself. Which I couldn’t eat, because I was too sick to my stomach. Where am I? I am hopeful tomorrow will be a better day. I’ve been telling myself that since Thursday and I think I slept an involuntary 60 hours out of  the past 72. However…. I’m awake, and I’ve been awake for more than 6 hours! And I am feeling better than I was. So that is promising for tomoorrow! Hopefully I will be able to  get up around 10am and actually be productive.  (late, I know- but Friday I got up at 10PM!)  Some people lay around all day out of laziness, and/or love it but I CAN’T handle it anymore! Tonight, when I stand up it only feels a little bit like I havepudding running though my veins. Yes, pudding. That’s the best way I can describle it. Or as if my organs are made of lumpy jello.

The super weakening jello-like, pudding feeing in my veins, has been downgraded to non-contsant. So hopefully…tomorrow I can fix up my room/finish washing my immense amount of clothes to get ready for the big move.  It’s just a couple of weeks away. I’m hoping we (my dad and I- my mom is already in Dever working) can get packed and out of here in less than a month so I won’t have to do any more chemo! I’m guessing the no-chemo part will be a failed plan, but I don’t know how well I can handle another round of it. They might as well just send me up to a hospital bed next time until I recover from the treatment.

Back to ‘Where am I?’ I am a recovering newly diagnosed lupus patient- not letting lupus define me. I’m determined to get back to good health- better than before maybe. I’ve been living in Philadelphia for a year, where I moved back in with my parents to take a hiatus from college. But I am moving to Denver, CO. I’m moving near where I just came from almost exactly a year ago. It’s weird though, because I feel more now that I’m moving “back in” with my parents than I did a year ago. I’m not sure if it’s because I’m more reliant on them with money, healthcare, housing, etc, or what… but I feel like I’m jusst now moving back in my parents. Weird huh?

I am excited to move. I am sad to leave the girlfriends I’ve met here, but excited to get a fresh start. Now that I have a diagnosis, a name and a treatment plan for my lupus- I’m ready to get ON WITH THINGS! Where I am right now, is not where I am staying.

When I get moved, I’m going to learn to the piano. I had lessons when I was younger, I know how to read music and all. I love singing… so I think it will be a soothing release, and who knows, maybe in time I’ll post something if it’s worthwhile :)

I’m also going to start back my college classes so that I can finish off my degree and work on my masters. I’m certainly not giving up on anything. Just trying harder.

In addition to getting serious about the piano (in my case-keyboard), finishing school, I’m joining Lifetime Fitness ASAP when I get to Denver, getting a trainer, nutrition program, and a healthy routine. I think it’ll be easiest to make these adjustments as I’m already in the midst of change. Right? right.

I know, totallly random post again- but I had to say something to feel alive again! I didn’t even open my commputer for the past 3 days. Now that’s a big deal.

Ps- Chemotherapy sucks. But I’m gonna kick it’s butt tomorrow doing laundry, cleaning, and doing some minor shopping. Go me!!

Chemotherapy #5? Losing Count. Oh, And Goodbye Philadelphia.

Mar15
DateTHURSDAY, MARCH 15, 2012 AT 2:04PM

Well, it’s just barely been a year and I am leaving Phildaelphia headed back for my ‘hometown’ of  Denver very soon. Soon as in weeks, not months. Everything is moving very fast at the moment, and I think it’s still getting faster.

Therefore, today was my last round of chemotherapy.     ….in Philadelphia. I fully expect to have more Cytoxan injected into my veins about this time next month, most likelu at the University of Colorado Medical Center. Today was definitely the worst yet. It’s the same dosage everytime I believe, and people told me that  each ‘treatment’ feels a little worse. But today I started feeling awful mid-treatment. Hot/Cold, Sweaty, Headache- which I am about to take a migraine pill for, because I don’t think my sexy ice-pack eye mask and advil are going to do the trick. So, I’m going to try to eat somemthing, drink some Visalus —> https://bareccaboo.myvi.net/products.html for sure, even though I’m not hungry. I’m not NOT hungry. And then definitely take a long nap. I’ll put the nap in ‘cat  nap’ AND the ‘cat!’ [I’ve been wanting to say that being a crazy cat lady and all, but I don’t thnkk it turned out that funny, lol]

Moral of the story is, man this chemotherapy stuff if tough! I wouldn’t wish it upon anyone- ever. BUT I’m not letting it get me down… I’m just going to let it force me to enjoy my expensive fluflly mattress and 14 pillows. :)

Until then, I will dream of organized clothes, new houses, old friends, and no clutter to clean before I trek across the country! Sweeet dreams to me :)

XoXo Becca

Oh the places you’ll go!

Jan24

So, after my third dose of Cytoxan Chemotherapy on Thursday (1/19) I was feeling pretty crappy for a few days. Mainly just really run down and had an annoying headache in the shape of a halo around my whole head. I still have a bit of a lingering headache in the back of my head, but I am doing fine on the nausea factor! To be honest, I’m not sure if it’s because I took multiple nausea meds or not, but I haven’t really had that come up as an issue at all. The night of the Cytoxan I felt like a laptop running out of battery.

Yesterday, I was going to paint pottery for some relaxation time with my mom… but we ended up shoe shopping instead… DUE to the winter storm leaving slush all over the city- and me only having ONE pair of shoes (mesh sided sneakers) that fit over my KAFO brace. Shoe shopping sounds fun! …until you’re sweating bent over in a chair at Macy’s trying on your 12th boot that just won’ t fit over the damn ankle hinges and awkward brace. After a few hours in the shoe department, we ended up in a different Macy’s store altogether, which had the apparent sizes I needed of the shoes that might fit. End of story….I ended up with shoes! Shoes I actually love!!! I got essentially a pair for everything I need- but not too many pairs! I got one pair of sweater funny looking but mighty comfy boots, followed by a pair of super cute black and gray wet weather boots (Coach brand!!!<— by chance that brand was the only one that would go on over my brace! Promise.)
I wear a 7 shoe size. These are a 9. The brace boot fit great, but I had to go to an shoe repair guy to make the left shoe fit my 'baby' foot. In addition to those super functional rain/snow boots, I got one pair or black leather flats, and two pair of 'Sperry Top Siders' (one pair pink with plaid, and one patent black with houndstooth). So In addition to those I have my mesh-y black/pink sneakers that I have been wearing with it. Complete Set! That was hard work finding those shoes. Thank goodness my mom was there to help me out- since, in the process, but not because of it, my brace BROKE AGAIN. It started broken in the morning when I put it on I noticed the bolt that slides in the angle hinge was GONE. Therefore, I was luckily enough to have the screws come unattached from the hinge unit, making it near impossible to walk- but oh well, I kept on shoe shopping!

Then I got home to set up my nebulizer after being in the cold air for the day, and whilst on the floor trying to set it up, I sat on and shattered the medication dispenser cap. BUMMER. I got a new one today from the same guy who fixed my shoes though (@ a Medical Supply Store).

It’s an old school picnic basket! Except instead of picnic stuff, it’s make by Grey Goose! I randomly got it at the salvation army one day a while back, and it is so cute and perfect! It has little geese all over the inside lining. Apparently it was something like this but I think my usage is wayy better!!

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Today (Monday 1/23) I had an eye doctor’s appointment. I need bifocals…. I’m getting old!! I told my last eye doctor I needed them, but she didn’t think soo. This one said I definitely do. But I didn’t like the other doctor to start with, so… I guess go with your gut! Haha But I am excited to get my new glasses. They are Vera Bradley brand too!! Funny. I’ll include a pic when I get them, they’re pretty normal looking though just to warn you! No hot-pink believe it or not!!

Tomorrow morning I will take “the leg” the brace BACK to the orthotic device office and have them replace the part. Mike, the employee there said they will ‘blue lock-tite’ the rest of the screws so hopefully I get to actually keep it…..working. Because giving it back is getting really old. I’m not giving it back tomorrow. I’m waiting for them to fix it there. I like walking, so I’ll wait the extra 20 min. You never really know how much we take something as simple as WALKING for granted until you cannot do it. Talk about losing your independence!! My brace [my 'leg' as I call it] is a very important part of me now!!

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I am going to try to start this ’30 days of Truth’ thing I found on another blog soon (today/tomorrow). I think the only way I can do it is if I link it to the pages on the menu at the top, because you can’t really have two blogs– on one blog from what I understand.

THEN tomorrow (Tues 1/24)
My amazing hospital roommate from New Jersey, JUDY, whom I met back in November, is coming with her mom to stay for two nights while she has doctors’ appointments in Philly. I thought it’d be a great idea to have them over here. It will save them hotel money and we get to spend time together as actual FRIENDS outside the hospital setting!! I’m so excited. She is a great person, dealing with so much. I’m ready for some good conversation :) If anyone thinks I am inspiring or ‘strong’ for going through a lot, you should meet this young lady. Wow. She is an inspiration to me! I can’t wait to actually spend more time together and chat!!!

Ok, bedtime now, Talk to ya later

xoxo becca

Big Stuff Happening!

Jan17

I’ve had a pretty busy couple of weeks. I think I had something like 9 doctors’ appointments in 5 days, not including Physical Therapy!

♥ Doctor Visits ♥

Primary Care Physician- who seemed to be a bitoverwhelmed by my massive amount of ‘history.’

She recommended I see a Psychiatrist once or twice, to check in with my medications and that I’m dealing with all these life changes alright— which I saw him today– I am! I passed the psych test I guess, he was a nice guy. Graduated OVER 50 years ago, so he really knows what he’s doing.  I also saw my favorite (closest human comparison I could make of him is to Einstein- with maintained hair).

Neurologist- productive, scheduled 3x more plasmapheresis treatments scheduled 1x month until April. Hopefully that will kick all those evil auto-immune antibodies out of me!


Dentist-if that counts, which it does, because I was there from 11-5.

 [Long story short--- I had previous corrective upper jaw surgery, which as a side effect, cracked my vampire tooth root (inscissor?) and the one next to it, closer to the center, so I had to get them fixed big time.
♦◊♦  My actual pretty teeth sample -->   
But that is just temporary to see if my bite is aligned properly with the new sizing of the teeth.
Final draft=Valentines Day. Joy.
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And of course my favorite, Dr. Huppert- my Rheumatologist.

I went in for what I guess I was a scheduled 'check up' /how's your lupus/ hows your paralyzed leg working out appointment. It went so well. He is a jack of all trades I swear. I mentioned to him my knee had been sore on my 'hurt' leg, and he says "Well yes, there's f

luid in it Rebecca." So he pulled out a big turkey baster needle, swabbed it with some iodine, and jammed it in my knee a few inches.

 It really wasn't that bad. I was amazed he was pulling synnovial fluid out of my knee, massaging the fluid out into the syringe a bit. I believe he said it was 5cc's (or mL's?) which was significant, but he's seen way worse. Heck, I didn't even know it was in there to take out so I'm good with a drop coming out- because my knee doesn't hurt anymore!!! (for now). I guess it is arthritis- but not the old age type, the lupus type.

SO Yeah, I definitely wasn't expecting that today...but it was awesome. He said normally you want less than like LESS that 0.1 cc's in there, so it definitely wanted out.   (End result--> little bandaid -->swelling gone, and no pain!) Wow. The things this man pulls out of his 'hat'....he's amazing. I wonder what I'll get next time! Hehe.

AND!!!!  HE decreased my prednisone steroids another 10mg down to 40mg!!!!   That will be officially HALF of what I started at!!Woohoo- GOODBYE chipmunk face.   (Here's a pic tonight--MILD malar rash ("BUTTERFLY RASH"), in case people want to see symptoms. This is the minimum it ever appears, I can't even feel it at this level. One day I'll try to grab a comparison ''severe picture" just for those of you who are interested in seeing it.)


Physical Therapy. So, other than all those doctors, I got my KAFO Hydraulic $9000 [of insurance money :) ] brace back again today from the hydraulics screw cracking over the weekend. They fixed the screw but need to order a new hydraulic system for it so I will have to give it back to the Custom Orthotics man- Mike, once more at the end of the week :(  BUT THEN it should be fixed for good, and I’m going to be running like Forrest Gump in no time!!! (without the breaking the brace, and much pinker).—–

It also happen to have re-acquired my bronchitis [ Supposedly I gave my parents the virus while I was sick---> they suffered through it a few days ---> then I got it back I guess.] Being so immuno-compromised with the chemotherapy, prednisone steroids, etc  I guess this sick-er thing is to be expected. But  I managed to avoid being admitted to the the hospital this time, other than the x-rays Dr. Huppert had me magically admitted and xrayed on MLK day at 5pm in the Hospital across the street- which turned out well- no pnuemonia. I am just back on another run of bactrum antibiotics… and IF HE LETS ME/thinks I’m well enough, I will be allowed to get my chemotherapy on Thursday morning. He really had a problem with my cough. But my lungs are just loud and seal-bark sounding I guess. Sorry :/

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  • I also want to start expanding my blog- if that’s even possible. I would like to add a section for:
    • Recipes and Cooking with Lupus
    • Lupus facts/awareness <– You know, the things they don’t tell you in the books. In short sentences.
    • An awareness group??

Perhaps I can make pages…? (Like different sections of my blog?- gosh I’m so new at this! Teach me!

  • ANND I read a blog where a girl did something called ’30 days of Truth List’ where each day was a different question/topic.  (credit: http://hope.gr/30-days-of-truth)  I thought it was an interesting continual read each day, and could provide a lot of introspection. SOO I’m going to do that. Maybe starting tomorrow, since I just noticed it is 4am….I need to pretend to sleep and then maybe I really will!!!—————

But before I go, while I’m on randomness, two things….

1) I want to start my own (possibly join) a Lupus Awareness Group to get the word out there. I really want to be active and involved. People just don’t know enough about it. And the more info about it out there, the more research that can be done, and the more about the disease can be understood. So if anyone has any ideas about starting some sort of foundation  or non-profit? or just some other kind of group. I supposed I’d design a website, a logo, and tshirts, and information, as well as an open forum.
♦♦♦ Sounds like- and will be a lot of work- so anyone with any ideas or suggestions- please THROW them at me! :)  ♦♦♦

2) Completely random side note—I just started drinking this Body By Vi shake (powder drink mixed with milk, or substitute in one of those shakey blender bottles) which literally tastes like cake and it gives you basically all the nutrients you ever need (from foods) if you have a hard time eating healthy enough (like me) and I am in LOVE with the shakes. So much so I’m considering selling them. It’s one of those pyramid things, but it’s not a scheme… so I’m actually considering it. Otherwise I highly recommend you try it!!! OMG It’s amazing. I will do a post about it in a day or two, like a little advertisement I suppose. It’s amazing, seriously.   You WILL be hearing more about it soon!!!!!

February is going to be a big month for me. I feel lots of productivity coming on. It’ll take work, but come on- work is good for you!!!!

Have a great night/day/morning everyone!!!

XoXo Becca♥boo

Long Time No See! [Family Visit--Holidays!]

Jan2


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… :)

We stayed out until pretty much all of the stores closed, which was actually too early. My dad started calling us the people “who used to live there”  …haha.   It was funny until the 3rd or 4th or 8th time.

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)

I believe I spent the first half of Christmas Eve in bed writing cards and relaxing in bed, the second half wrapping presents, and then that night my mom, dad, and I unwrapped our presents!!! :)

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 :o (   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

☣ Cytoxan ☣

Dec21
Chemo doesn't HAVE to be for cancer! (I imagine that it will appear a little something like this- my first chemo infusion back in November.)So, tomorrow morning, in right about 12 hours I will be getting the second dose of Cytoxan (Cyclophosphamide) Chemotherapy infused into my veins.  I am excited in a nervous sort of way. In a way, I’m SO happy I’m actually getting treatment for a disease that has been ‘silently’ tearing me apart for so many years… but on the other hand, I’m thinking “Holy CRAP I am about to go get MORE chemotherapy! Why the hell would I even consider being happy?!“I’m not totally sure what to expect… I don’t think I really even had any nausea the first dose I received. BUT I was in the hospital, and being given lots of other medications. From what I hear, it gets a little worse each time- as it builds up in your body, and your body fights for whatever it has left. But I hear different things from different people. I don’t even know if I get an outpatient sort of recovery room, or if I sit in a big room full of other people getting treatments…?  So many questions, but they will all be answered soon enough. I will definitely give an update tomorrow and let everyone know how things went and all my thoughts.I’m a  little disappointed the chemo had to take the place (without rescheduling available) of my physical therapy- but the P.T. said I  will need recovey time, and to be PATIENT and just wait till Friday like a good patient. Haha, I love her to death. She is very well educated- and can handle all of my questions/comments/blabber very well!  Perhaps I’ll be able to find her some small holiday gift as a thank you for dealing with me :)    I truly believe, even with the little bit of P.T. I’ve had so far, it is helping  A LOT.

Anyways, I have a few more things I need to do before I get to sleep for my early and BUSY morning tomorrow! So, i hope everyone has a wonderful night- and happy first day of Hanukkah to anyone who feels that may apply to them!   Happy Holidays as well, even though they are ridiculously stressful and I refuse to go shopping until sometime in probably March now after going to Target today!

♥ Signed, nervously excited,
Becca ♥