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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

Quick Update. Life is Good.

Apr14

Image

Not too much new going on symptom wise lately. I suppose that’s a good thing! I’ve had recurring headings the past few weeks. Some have been minor, but some have been migraines unfortunately. My rheumatologist prescribed me Relpax 40mg, which I have been taking at the onset of a migraine successfully for several years now. That way I will have enough to hold me over until I get established in Denver. Also, even though I am taking Ambien 15mg, and 1mg of Klonopin (<–for my separate ”neurological sleep behavior disorder”), I have been having trouble staying asleep more than 4-5 hours at a time. So my rheumatologist also prescribed me Trazadone 50mg to take 1-3 of depending on ‘how effective I determine it is… I looked it up and it’s an antidepressant though, that’s occasionally used for insomnia-off label. Strange huh?  I’ve only taken it two nights so far and haven’t noticed much. So I’ll have to keep you updated on that…
Meanwhile, the professional packers come to pack up all of our stuff Monday, Tuesday, and possibly Wednesday. Then the moving truck should be packed up by Friday the 20th! Yikes!!! That’s less than a week away now. Then my dad and I will do a little cleaning on Saturday, and probably leave with the 2 dogs and 2 cats for the 28 hour drive to Denver on or around Sunday the 22nd. So it’s all coming down to the wire very rapidly! Now we’ve got to manage the technical stuff, like water, gas, and cable services. Should be a fun week. HAH! Wish me luck :)

I also added more photos, and and a video of the ER doctor pulling the catheter tubing out of my chest (slightly graphic)!

Oh, and by the way- if you aren’t following my blog- don’t forget to click “Follow” over to the upper right side of the page, and you will get an email whenever I post a new blog  =)

And I always love comments, makes me feel like people are actually reading my blog! Haha. Have a great weekend everyone.

xoxo becca

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

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.
---------
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 :/

————–

  • 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

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!!

——–

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

Coping. Doctors. Holidays. Book.

Dec12


COPING

I think I am just now starting to cope with the fact that I actually have Lupus, a lifetime Chronic Autoimmune Disease. And a serious case of it. From what I can tell, when they are planning from the initial diagnosis to start/continue Chemotherapy and 80mg of Presnisone (immunosuppresant steroids) for 6 months… that classifies your disease as serious :(

Now, when I say I’m coping, I’m not crying about it or getting depressed or anything like that. I believe I am just getting over the initial semi-ignorant shock phase. The past week has been pretty busy for me… and it really showed me how different my life is now, than it was just one month ago. Everything is different.  Hopefully I make a strong recovery, but I am no longer independent. I am not dependent, but I am not at the level of complete independence I had and loved.  I feel a little guilty for the inconvenience I’m putting on my family, but I don’t know what I’d ever do without them in this situation.  And my dad, whom luckily is retired, has essentially set his life on hold for me. I just hate feeling like a burden. I’m 23, I was just about to start nursing school, and POOF. Everything changed in a literal blink of an eye. Anyone relate?  But ANYWAYS, onto some other stuff.

DOCTORS

I had an appointment with my primary care doctor earlier this week. Poor lady, I’m fairly new to Philadelphia, so I’ve only seen/met her once before. Then I made this hospital follow-up appointment with her, show up with my dad  (because out of nescesity he goes everywhere with me now) and when she asks what the visit is for… I say “WELL, I know last month I was relatively healthy when I saw you, but…. I just got out of a 16 day stay on the Neurology floor in the hospital, I have LUPUS, Transverse Myelitis, a lesion on my spinal cord and I cannot currently use my right leg.  Here’s my medication list- it’s about 30 pills a day, and the hospital told me I need some additional meds but that I need to see you- my primary care doctor- to get the prescriptions.”   I think her jaw dropped open. She told me she was sorry…. which is comforting and all, but I felt more sorry for most likely completely surprising and overwhelming her. At the end of the appointment I think she was holding back from giving me a hug…

While I was there, I think I got a picture of my hands with a mild case of  ”Raynaud’s phenomenon”

But the appointment was very helpful. She recommended I see some sort of a therapist, dealing with people coping with illnesses- and even possibly family counseling- because it is definitely taking a toll on more than just me.  I’m not big on therapy- but this time I think I might have a thing or two to learn from it. Has anyone of you tried this?

She also prescribed be a benzodiazapine (Klonopin) to take up to 3x day. It’s similar to xanax/valium I believe.

They don’t make me feel loopy, but they certainly do take away some of the absolutely overwhelming body crushing anxiousness I have been experiencing at somewhat random times, and of course stressful times. That was a neccessity- I think it’s from the massive steroid dosage I am on- perhaps combined with everything else going on in general- but I have been soo anxious, in a nit-picky way. It’s  like I lost control of my leg, and therefore I feel the need to overcompensate by controlling everything else- which is difficult in itself. It’s like a crazy hectic circle I’m running in. But- point being, the little green pills help.  AND she gave me ambien, which helps me get to sleep. I never really had a problem falling asleep, but I guess again because of the meds, I don’t really fall asleep at night.  She also told me I need to begin monitoring my “fasting” blood sugar in the mornings to make sure my kidneys are handling all these drugs alright, and I don’t get diabetes. Pro: I’m a gadget nerd and I got an awesome blood-glucose monitor that plugs into the computer via USB and logs my info :)   Con: No more  juices-orange juice, cranberry juice, apple juice, none of it anymore :(   I basically used to live off of orange juice. So I’m adapting to that.

Oh, and I had my first physical therapy appointment (Evaluation) on Friday. One good thing about living in the city- the rehab center is so close my dad just pushes me down there in my wheelchair in about a 5-10 minute walk.  The P.T. said I have ‘clonus’ in my foot, ankle, and knee, but my hip is already strong and on the road to recovery. Iwill need to be fitted into a brace  that supports my ankle and all the way up to my knee. It will be molded to my leg and sent off to be made I guess. She said it will have metal around the joints- and it will enable me to WALK!!! I can’t wait to see it. She also said I have a strong chance of recovery because I have strong muscle tone and willpower :) :)   So I will be going to P.T. 3x week (Mon, Wed, Fri) at 11am until March. I start the actual ‘therapy’ tomorrow and I am SO excited. I’m about to officially be on the road to RECOVERY! (for this current issue at least…)I have another appointment with her in early January a few hours after I see my neurologist for my first post-hospital check up. So that should be an interesting day of doctor visits.

Also, I have  a very important appointment coming up with my rheumatologist (whom I got so incredibly lucky to receive as my doctor in this city) on the 16th of December. After that appointment I should be able to get a handicapped parking permit, my disability coverage, and some sort  of a long-term treatment plan…I think??.  His name is Dr. Huppert. He  is so well educated in many illnesses, but especially Lupus- and he says my case is ‘special.’ I believe he means unique, in the way my symptoms presented? But he wants me as a patient, to understand my case of lupus, and hopefully help me as much as possible. He told me my treatment plan he’s giving me is unconventional, very harsh, but necessary-if I want to walk again. I am counting down the days to that appointment. (Only 4 more!) So, a big blog update will come after that I suppose. Weird, I never thought I would be so excited and full of anticipation to go to a doctor’s appointment.

I’ll give an exciting therapy update on here tomorrow.

HOLIDAYS

So yesterday my mom and I went Christmas shopping. Holey gosh  darn gamoley. It was crazy. First off, in a wheelchair it is a little difficult to get around stores, people, etc…. but there were so so many people. That was my first experience trying to get around in a crowd in my chair. It ended up going well, we got lots and lots of stuff at this amazing outlet mall an hour north of Philly.  We spent way too much money but got oh so much wonderful stuff. :) Retail therapy at it’s best. The wheelchair comes in very handy as a human shopping cart :)

Today I hung out with my mom and one of her coworkers, who is just a bit older than me…and we explored Philly. (Sounds like it would be weird but it wasn’t at all- she’s super nice and we got along GREAT). Anyways, she’s from Boston so we showed her around Philly a bit…We started in the historic Macy’s in Center City- where I got the most adorably amazing pink Coach watch!!!  Then we walked around (I rode in the chair of course) and we had a lovely day strolling through the city- went to ‘Christmas Town’? which is set up in LOVE Park- and had some WARM mulled wine. YUMM YUMMM YUMM. We just did lots of little local vendor shopping- jewelry and such. And we ended the night at my favorite sushi restaurant in the entire city! It was a very good day :) And I made a new friend…. my  mom’s coworker– Erin. :D

Well…. it is 3:30 am again. I guess I should take my ambien and go to sleep so I make it to therapy in the morning!!!! Does anyone else get excited to go to PT? I’m just soo ready for my leg to WORK!!!

—–

Oh- and I just started reading a book about Lupus- called  ”How can you NOT Laugh at a Time like This? – Reclaim your health with humor, creativity, and grit”. By Carla Ulbrich. So far so good. The title alone reminds me of ME, so it’s gotta be good right? Has anyone read it??

I’d love to hear everyone’s thoughts on some good books, routines, coping, ANYTHING!

Goodnight everyone! Thanks for reading :)

XoXo – Becca

Ooofta!

Dec7

Wow. It’s 3:30am and I should be fast asleep, but I stayed up to take my two antibiotics scheduled to be taken at 2 am… and really I am still up because this stupid blog. Just kidding, it’s not stupid- just extraordinarily frustrating. All I wanted to do is get a cute, unique theme different than most peoples’ and the WordPress site has given nothing but trouble.

If anyone knows how to upload a blog (from an outside .zip file) onto WP, please please  let me know! I think I might have spent literally like 5 or 6 hours trying to figure it out and have essentially gotten  nowhere other than I paid to register my domain name http://melivingwithlupus.com . Woohoo….

While I”m ranting, I might as well tell you about my lovely day. I decided to take up this new hobby of  COUPONING. Not just because of that new show, I have always liked coupons for some reason, but the new show made me want to go all out and try it. So I did… while I am still crippled in my right leg, riding one of those awkward electronic shopping  carts, following my poor dad around the store as I sorted through all my envelopes of coupons and what was on my list… all while we were in an overcrowded Philly grocery store that I decided to try out to see if it was better than any of the other crappy grocery stores in the city. My dad restrained his frustration very well, but I was stressed out too- due to everything culminating on me, and slowly overwhelming me until I felt like I almost had a nervous breakdown as soon as I got back in the car. Hopefully all the anxiety was from the massive amount of pills the doctors have me on, and hopefully they can put me on another one (lol, yes another)  for occasional anxiety. It wasn’t like a  panic attack- it was more like a whirlwind of a tornado was spinning around me… and then my lips went numb. Not sure if that’s normal or not, but  it was weird.

Anyways, later on (like next week) I might start writing on a separate page/tab about my couponing experiences.  But to sum that story up, I saved $89 on about $300 of groceries, so I think I did rather well for my first try! However, I’m not sure that 90 bucks was worth the 3 days it took off my life expectancy! I guess the culmination of not being able to walk, barely being able to navigate

Early tomorrow afternoon I have a follow-up/update that btw I have lupus appointment with my primary care doctor. Hopefully she can give me something to calm my nerves for situations like that.  And/or hopefully I will just get better at dealing with things in a different way. This is definitely a learning process- that it seems  like you find out piece by piece how it actually affects you. the over-crowded store I didn’t know my way around, sorting through coupons, and trying not frustrate my poor father who had to tag along the whole time- made me a little anxious! Check it out at the end of the near 3 hour shopping trip… this is how I felt as she was scanning all my coupons at the end. This is the face of hope- hope that all that damn work saved  some money!!!  (Which it did).  But next time I will try a little different of a technique. Hopefully things will be able to move faster, and with any luck I’ll be walking! Even though my first Physical Therapy appointment isn’t until FRIDAY.

Anywhoo…

We will see what the doctor says tomorrow. I suspect she will recommend a therapist, which is an idea I have never been fond of. But for some reason, now it seems like a decent idea.  I’m going to need a bariatric surgeon pretty soon too if they don’t get me off this 80mg of predinsone per day. Ah it”s like my stomach just doesn’t have a stop button.

Well, hopefully tomorrow will be a better day. I plan on going to the doctor, reading some of my Stephen King book about the Kennedy assassination to relax, and then possibly screwing around attempting to install a prettier theme on here!!

Tomorrow will be a promising day, I’m sure of it :)

XoXo Becca