Archive | March 2012

Lupus’ Sucky Symptoms

Mar19
MONDAY, MARCH 19, 2012 AT 10:19PM

I felt relatively well today!!! I got up between 10-11am, went out to get breakfast and pet food with my dad, did a minor amount of grocery shopping, and ended up home late afternoon. At some point I started itching. My ‘new’ stretch marks :( started itching. Then I itched all over. Still do. I’m not sure if anyone who reads this knoew about or has lupus, but is this common? Or anyone with gross stretch marks? I feel like they hurt and itch as they are growing in. Today they have become almost fuschia. It is awful. From my belly-button down, and then my hips, and top half of inner thighs. Lupus is SO not pretty.

Anyways- after all that- that’s not my new symptom. I ended up taking 100mg benadryl to try to soothe my insatiablly itchiness, and when I woke up from my benadryal nap EVERYTHING hurt to touch. And still does. Kind of like when you have the flu- and your whole torso/back hurt like a giant terrible bruise? Well, thats how I feel. Like everything touching me is a punch. I looked it up, a little worried, since it seems a bit different than flu pains, and what do you know, lupus is a common cause of this. I guess it’s through the same mechanism as fibromyalgia. But I had no idea. I wonder if this means I’m going into a ‘flare’? I sure hope not. Hopefully it’s just a temporary stress induced symptom and will pass soon…along with my neverennding headache!

On a different note- I am still trying to figure out a subscription/follower link, so bare with me. I might be changing a few things up logistically and the way things look. Or maybe not….

We will see. Please comment if you have any tips or thoughts!! XOXO

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

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

Mar15

LupyLady

I wrote a new blog post, on my new website. I’ve actually written a few, hopefully you haven’t missed them. I’m working on how to get some sort of a subscribe to/auto-generated mail delivery whenever I post a new entry. It’s just different on this new  site I’m using. Why did I switch again? Anyways, please check it out, comment, feel free to provide any suggestions or tips you might have.

And from now on I will be posting at http://lupylady.com

In the meantime, I am starting a  ’90 day challenge’ and you guys should join me. You replace one or two meals a day with a super yummy Visalus (cake batter aka sweet cream flavor) shake. It give you tons of nurtients you are definitely not getting, and if you do it right- you’ll shred the pounds.  Okee dokee, well check it out if it seems  up your alley. It’s super easy to make in under a minute and is like $1.87/shake (meal).

Enjoy XoXo

Big News!

Mar10
SATURDAY, MARCH 10, 2012 AT 11:20PM

I am moving from Philladlelphia, PA —-back to—->  Denver, CO!!! 

Reason being, my mother’s job. She works in the corporate world in real estate management. She actually turned down a possible job in HAWAII for this one, so she must love it. I don’t mind Denver, becuase that’s where I moved here from just a year ago!

It truly is funny how things work out in life- full circle. [Makes me want to watch the ‘Lion King’ – the Circle of Life :) lol!) But seriously, leaving college, moving back in with my parents and moving to Philly seemed so crazy at the time. Little did I know what would happen health wise shortly after. I mean- had I not moved, I’d have been a one legged jobless student with quite a terrible predicament.  However, i DID move (upon some strange instinct). I found a wonderful doctor and team of health professionals to diagnose and begin a treatment. I will be sad to leave the possibly best lupus doctor in the entire region, but I am confident the Hospital of CU Denver will be able to transfer my treatment and care plans right over.  Anyone with any experience there (the new Anschutz Campus) with Rheumatologists specializing in lupus or any advice, feel free to please leave a comment below.

Most of all I am excitied for hanging out with my old friends! And House Hunting!!! Except my parents can’t decide which part of town they want to live in so it is quite frustrating and I gave up for now.

———-

On the helath side of things, I just got out of the hospital last night. I was only there a day and a half. They were checking out my lungs since I still have pain and shortness of breath- but it’s just severe pleurisy as far as they can tell. Which is really crappy, but I’ll live, so I’m alright with it I suppose. The did Xrays, an EKG, an echocardiogram, a Lung Function test- which was pretty neat, plus a few more I can’t thing of right now. Soon, I will go by the hospital records room and get copies of all the fun pictures and post them soon.

For now, I’m going to head off to bed so I can wake up early and go to the last day of International Philadelphia Flower show and burn off some creativity and take amazingly beautiful pictures :D

See ya later alligator!!

-Becca boo
XoXo

Typical Day In The Life Of A “Loopie”

Mar5
MONDAY, MARCH 5, 2012 AT 5:25PM

Today was a “dictionary day.” I went to sleep at a decent hour last night, midnight maybe? But I didn’t couldn’t get up until 3pm. I take that back. At some point I got a bowl of cereal, which I spilled half of on my comforter. [If you don’t know what I mean by ‘dictionaries,’ refer to one of my very first blogs- where I described the feeling on my body when waking up.] You see, because I can’t stand well, I spend lots of time in bed doing things, including eating. I know, it sounds gross- eating in bed. But being so immobile, it just became very convenient. Now that I think of it, if I want to get rid of my ‘steroid weight’… I should just not eat anything in bed anymore. Not only is it cleaner and more sanitary, but I would barely eat. Haha. I would have to go downstairs and eat a meal. Not really a big deal, but it will make a difference I bet.

Anyways, as I said, today was a dictionary day. So, I got nothing done. I hate days like this. But I’m glad  I have a name (LUPUS) and reason to tag along with it instead of just‘lazy’. I even missed physical therapy :( That’s the first time I’ve missed it yet. So that was disappointing. I also have a list of things to do that now I have to put off until tomorrow. Including calling my academic advisor at the college I am going to take courses at. It’s an online college, which seems most fitting for me right now. I would take some courses at a ‘real’ (not online)  college, but since I have so many credits completed from my 4 years at Colorado State University, I only need like 2-3 semesters worth of credits to get my Bachelor’s degree in Psychology.  So I have a lot to do to get that all set up. I am pretty excited about it. It will give me a purpose for a little while, since I’m not allowed to work, and can’t attend classes at a college right now.

However, it’s almost 6pm, and the dictionaries are gone now. I feel totally normal except for the usual headache. But who wouldn’t have a headache after being in bed for 15 hours! Ughhk.

I’m going to cut this blog short and go make something for dinner after I work on my recipe book a for a little while. And I’ll eat downstairs, at a table!!! Like a normal human being.  Man, I am lame… haha.  THEN I’ll get ready,  because I’m going to ‘go out’ for the first time in sooo long!! I met a super nice chica at the local pub I go to, and we are going to meet up there tonight. I met her last time I went theree, and she showed me how to jailbreak my iphone- so she’s gotta be pretty cool right? :) Anyways, we are meeting up at 10pm- so this will be a good test of how much Lupus really affects my life- and whether or not I can actually have fun every once in a while!

Wish me luck!

-Becca
xoxo

Lupus ❤ Lupy/Loopie Lady!

Mar3
DateSATURDAY, MARCH 3, 2012 AT 12:26AM

Today is a great day!!! I found my glasses!! They are brand new super-cute Vera Bradley glasses, and I lost them about two weeks after I got them! Now, two weeks later… I found them and I can seeee! :)

———

So, it’s been a while. I’m going to try to start doing this (“blogging” or journaling) very regularly, I’ve just had a crazy past few weeks I guess, and I got all involved on switching over my blog to my own website- http://www.lupylady.com – if you didn’t notice. :) So lots to talk about.

First of all, since I made my new ‘website’. I can make links to other pages I make. Which I fully plan on doing. In the next few weeks you can look forward to “30 day’s of truth,” “Things I like… quotes I like” “About Lupus,” “Healthy Recipes I like”, “Couponing”…possibly.  Maybe more? Got any ideas?

So let’s see what we need to talk about…  My health recently, life in general, lupus: what I’ve learned personally and elsewhere. Before/After photos, other photos— up on the “photo” link. Learn with me… The book I’m reading- chapter summary page?  Lotsa stuff.

Let’s get on with it…

  • My health recently- stretchy!

    Great! For the most part I haven’t been that sick. I have been feeling much better than I started out. Occasionally, I have getting bouts of fatigue, but that’s nothing new. I was in the hospital for bronchitis, but I think I may have blogged about that. It was just a couple of days. “Mild” photo of inner thigh (sorry, icky)——>

    That’s     the point when my stretch marks began…or at least, really started to show up bad. And let me tell you, they are BAD. So I am the lucky recipient of dozens of huge, lengthy, red, itchy, indented, severely unattractive stretch marks. Ok, I think it’s more than dozens. If you want t see the gruesomeness, I may post a few pictures for ‘educational’ purposes. But they are truly terrible, and I’d say, the 2nd worst symptom of my lupus diagnosis. (First, being loss of function in my leg). Unfortunately, my skin is so thin now, that you could pinch me and it iwould break skin :( But I have high hopes, that as my medications decrease (I’m down to 30mg of prednisone now!) and my health increases, that this willl all dissapate and be a distant memory.
  • [Warning: Technical rant]—>  Lupus is NOT pretty. And me getting fatter is NOT the cause of my hideous purple stretch marks. So, corticosteroids (prednisone) is the best anti-inflammatory medication my body can buy. BUT, it has lots of terrible side effects. Most common- weight gain-which I THOUGHT was the cause of my stetch marks (aka striae distensae). APPARENTLY  the steroids release excess “glucocorticoid” hormones throughout my bloodstream… which are responsible for the stretch marks- NOT the stretching!!! Skin stretching, can play a role in the direction they run and  form, but it is not the CAUSE. ANYWAYS, I thought it was interesting that I have these awful marks not just because I got fat!    [End technical rant :) ]

OTHER than all of that skin stuff, I’m doing pretty well!! I have my 5th round of chemotherapy scheduled for next week (the 15th)…. and I should only have a couple sessions left. By then, I think my steroid dosage  should be low enough that my low immunity should start to get better and hopefully I‘ll have near normal immunity! Maybe better than ever :)

  • Other Lupus Stuff!

    Not to be a downer, but I have a complaint. I am getting soo tired of people seeing me with my brace and asking me either 1) What happened?? or 2) Does that hurt?My answers 1) Spinal cord injury & 2) Unfortunately, yes.

    It’s just so complicated to answer what happened. I mean… really they don’t want to know. And does it hurt?! What kind of dumb question is that. Note to yourself: if you see someone with a cast, brace, etc…. don’t ask questions like whether or not it hurts please.

That’ll do for now, I am going to work on photos up in the photo link. I’m going to post some before/after pictures, in addition to several other ‘themed galleries’ for you to look at if you’d like.  If I don’t fall asleep, I will try to start up my ‘30 Days of Truth.’  So, lots to come. Be sure to check out the Photos link above.

See ya later!

XOXO Becca