Tag Archive | life

Handicapable

Jan28

Wheelchairs suck. That’s all there is to it. Having to be pushed around by someone else is never an fun idea, suppositionally or in actuality. I’m generally a positive person, but if there’s one sure way to bring you down- it’s a wheelchair, literally. I hate being in a wheelchair. I hate having to sit all the time, I hate having to push myself with wheels that collect dirt etc as I go. I hate it when people look at me like I’m broken. News flash- I’m a pretty damn strong lady. If you think because I’m in a wheelchair and you held the door for me that you are a good person, thank you, but that doesn’t count for your good deed of the day. I’m just as normal as you,  except I happen to be going through visible hard times. Harder than you think, and no I still don’t want your sympathy.

I don’t want to NEED someone to help me. I don’t want it at all. But I do need it. And therefore I blame my wheelchair. Admit it, when you see someone in a wheelchair, you wonder what their sad story is… or you rush to try to help them. But you aren’t helping because it makes it easier on me/them. It’s to make yourself feel better.

I’m going through so many internal and external struggles right now I couldn’t even list them on all my fingers and toes. But I’m pushing through it… I’m keeping my chin up for the most part. Today, I feel angry, tomorrow I may feel apathetic towards it all.

At some point soon, I will write a blog capturing my hospital stay last week (8 days this time). But not right now. Right now, I’m going to practice walking. Because that’s what I have to do. In physical therapy I can now stand up, and [make a step]. And then after one step, there are more.

This week I started my step towards a new happiness. As my dad recently told me, my life is not ever going to be what I wanted or expected it to be…. and I have to deal with that.  I realized that was true. It was a harsh realization, but then I realized something else. Maybe the life I thought I wanted- maybe the path I thought I needed to follow- wasn’t. Maybe this new path has been meant for me all along and will make me better for who I am now.

Just a thought.

 

XoXo Becca

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

Inspiration from Life

Sep27

 

♥ “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!

 

Lupus really sucks.

Feb11

 

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

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

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

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

Why was I admitted??

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

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

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

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

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

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

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

The EMERGENCY Room Visit….

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

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

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

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

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

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

Physical Therapy

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

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

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

Hospitals may suck, but at least they make you feel better!!!

Jan5

♥  2nd Lupus Hospital Stay – 5 days  (December 30th-January 3rd)  ♥ 

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—>

But basically instead of an abscess or pocket of pus/infection  under my skin, most likely from an infected hair follicle, I just had infected tissue. Like, the fat skin, whatever tissues it touched were infected. But don’t worry, the surgeon came in my room all by himself with his kit, sliced me open and pulled it right out!!! Part of it had actually become necrotic [DEAD]. Fun, that’s probably why I had a fever.
[♦◊♦ WARNING - - - if you get grossed out easy, you might want to stop reading- and then I'm going to show you a picture of the incision- so stop reading here maybe? But really..... don't! It's not that bad. AND this IS a lupus blog ♦◊♦ ]

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.
That was pretty much the most exciting part of my stay. Oh, and New Years Eve!!! LUCKILY, I was awoken to have my blood drawn at 11:55 pm, so I turned on the hospital tv really quick and watched. I even took a picture. I heard one or two fireworks, but being in center city, surrounded by huge buildings made it kind of hard to hear (or see) the show in South Philly.
I didn’t actually get my mini-surgery on my stomach until the next day, January 1 2012. Then after they determined I didn’t have the flu, my fever went down, and my blood cultures were alright, they let me go home late in the day on Tuesday the 3rd!!!!  They told me the blood work indicated I am NOT in a “lupus flare”! (Good news- however, this makes me realize how much I still don’t know about the technicalities of lupus- such as when you are in a flare, or remission, or just normal? )
The docs released me basically saying I just need to be careful with my skin and airways in general.  They wrote me prescriptions for Bactrum (antibiotic) 2 at a time, twice a day, 5 days. And, morphine pills. Only 14 pills, but I’m pretty sure my lungs and/or won’t hurt enough to need more. Hahaa.
Here is my ‘owwie’ now, looking pretty good. Smaller in size. I put a size comparison pencil for fun :)  I will make the two photos thumbnails in case you get grossed out. You can click them if you’d like to see bigger!!

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New Symptom?

On a separate note, I have a little  bad news. It’s a new symptom that started in the hospital. I didn’t think anything of it, it was maybe the last day or two I was in there that it started.  My right forefinger and thumb- at the very tip have sensation loss. It’s almost like I burned them, or shocked them or who knows. Or, it feels like I have superglue on the tips! [Really the tips, like you have to lift your hand and point your fingers directly downwards onto the table to feel the part I'm talking about.] I tried to ignore it, figuring it would go away, but now I have slight sensation loss in the tips of the rest of my fingers– on both hands. It’s most severe still on the first two. I called my rheumatologist and he said he’d like to see me tomorrow (even though I have an appointment in 10 days). So we will see how that goes.   I get to use my KAFO leg brace tomorrow again at physical therapy… I’m hoping I get to bring it home!!!!
That’s all for now.

XoXo BeccaBoo

“The more light you allow within you, the brighter the world you live in will be.” ~Shakti Gawain

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

Merry Christmahanakwazaka!!

Dec26

HEY GUYS–

Sorry, I haven’t given any updates since my chemotherapy treatment. It didn’t even make me feel bad other than being super tired afterwards (most likely because all the anti-nausea medication, Phenergan, that I took. Anyways, I didn’t notice much of an affect of it at all, energy wise I felt fine. But I did notice it was harder to (well, more tiring)  to get around. Especially on the wheelchair. It felt like not only was I rolling myself around, but had some really heavy sweaty man sitting on top of me, daring my arms to push the wheels. Ok- that was a little excessive- barely. Then I go back for my next round on Jan 16 I believe.

Anyways, although I am having trouble falling asleep due to pain, it is way to late for me to try to write anything o f worth on here tonight. I will be back on the blogging scence tomorrow morning with lots of juicy details of my past week. Haha, maybe some of them coul’ve been exciting…. SO I will try to do better at writing on here more often, because I enjoy i t. Apparently I can video blog too. So maybe I’ll post one of those every once in a while.

Well, for now, I hope everyone had a Merry Christmas and/or a Happy Healthy holidays!!!! I’m thinking about all of you out there! Happy Holidays :)

xoxo-BeccaBoo

—Oh, random quote of the day:  ”If you’re going through hell, keep on going. Don’t slow down, if you’re scared don’t show it! Because you might get OUT, before the devil even knows you’re you’re there!!!”  -Rodney Atkins

☣ 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 ♥