Tag Archive | hospital

So much… (Part II)

Dec30

Party in the hospital room :)

So, this will be a mini-update, and after the new year, I think I will write a comprehensive overview of what I’ve gone through the past month or so- perhaps a series of updates on each topic. *Remind me to write a post on how being in a wheelchair does not make me any different from most anyone else. I’ve just gone through a hell of a lot more- most likely. So please don’t feel sorry for me.*

Anyways, so my dear family friend Bob came to my rescue at the hospital. A few days later in the hospital, my parents returned from vacation.  Lots of doctors came in and out, and I had several scans, MRI’s etc. No one could figure out what was wrong. It seemed disappointing that because the doctors could not find anything at that time, they almost seemed to discount me. However, I (<–very capital ‘I’) was still the one in very much pain, and had no use of my entire right leg.  It went on like this for the entire week I was hospitalized.

Honestly, the only positive that came out of the stay was how much I could see everyone cares about me. In addition to the well wishes from my friends and family online and via telephone. I had lots of visitors. All at once! It was a giant coincidence, but one of the days, I had a room FULL of visitors. Within about thirty minutes, in addition to my parents, my ex-boyfriend’s parents (whom I am still close with and honored to have them in my life) showed up expectedly, then one of my best friends (Stephanie) and her mom came to visit, and then my hairdresser of almost a decade all came in at once. It was overwhelming and wonderful.

Other than that, I’m sorry that I can’t give you a diagnostic update. One possible diagnosis, is ‘Conversion’ syndrome. I’m not a fan of the diagnosis… being psychiatric. Essentially it is like PTSD. Another possibility is RSD, a neurological nerve disease. Neither are great options for me, but nothing really is at this point. I will try to give updates as they come, as each doctor’s visit occurs, etc. So far, I’ve seen a neurologist, who I will see twice more in January,  a Psychiatrist, and am attending regular Physical Therapy- with a Neurology specializing Physical Therapist. I have an appointment scheduled in February with the Pain Management Clinic.

For now, my leg is still painful, I am on way too much medication, and am restricted to a wheelchair.  Hopefully we will figure something out.

Thats the key right now- the hardest part for me is HOPE. Having gone through this last year, I feel like everything I am going through is just reliving it. It’s like watching a horrible movie over and over again. You don’t like it, you don’t want to see it, but you are forced to see each and every scene. It’s hard to explain, but that in and of itself is making this time around a lot harder. So… I am trying to keep my chin up.

——-

Other than that, I will definitely keep you updated. One update- I have finally received the gift from lupus of joint pain. Some days, every one of my joints from my knees to the knuckles in my pinky fingers, it just hurts- bad. Surprisingly Aleve is pretty helpful.

Talk to you soon…

XoXo Becca     *Happy New Year*

So much for the ‘good times’… (Part 1)

Dec11

THE FIRST NIGHT:

Image

Original incident. Alone this time, no photos until later on in the stay.

Well, according to my last post… LIFE was great. It was. I had my health, my job, and happiness with life in general.

Then, a day or two later it wasn’t. Why? Oh…Same old, same old.  This time I was laying in bed- I felt a sharp and terrible pain in my right hip. I tried to change positions and I could not move my right leg.  Immediately, panic, fear, and terror filled my veins. My parents’ (whom I’m currently living with for support) were on a cruise. Luckily I had my cell phone nearby, because I had to find which cruise ship they were on, call it’s emergency line, and try not to give my mother a heart attack while telling her what was occuring. After that brief conversation I called 911. Luckily we have a ‘code lock’ to our front door along with a key lock so I was able to give the police officers who arrived first the lock code. Then EMS and the firemen arrived.

By this time, it must have been almost 2 in the morning. I had my parents’ 2 dogs on my bed, my 2 cats, and 4-6 emergency responders all in my bedroom. Not to mention I was wailing tears because this had happened again. IT had happened again…

It was pure CHAOS, and strangely with so many people (and animals) around me, I had never felt so alone.

One of the police officers managed to carry the small dogs downstairs for me while I told the paramedics as much as I could manage to convy. Luckily my mom ended up calling back and I believe that I just flat out handed the phone to one of the men…or held it in the air until they got the picture. I was in excruciating pain in a leg that I couldn’t even feel. It seems paradoxical- but it was true. And still is. Once the emergency crew got my vitals, and basic information, they decided to take me to the hospital. My hospital: University of Colorado Hospital- Denver (about a 30 minute drive).  Four men carried me down the curving stairs of my house in what I can best describe as a body-bag  with handles and without a zipper. I felt utterly helpless, and literally had my ‘life’ in these mens’ hands. Then off I went- to the land of doctors and needles.

I get to the hospital, slightly less hysterical than previously mentioned, and am immediately taken to a room. I was helpless, I was alone, and all I wanted to was be ‘normal’ for a change… so I wouldn’t even have the chance to be telling this story! The medicine they gave me wasn’t strong enough, their bedside manner wasn’t calm enough, and worst of all I felt absolutely terrible ruining the second to last day of my parents’ vacation!

Sometime soon after, my mother got back in touch with me through the hospital phone, to the room I was in. Somehow I felt relief she had managed this difficult feat. As quickly as the feelings of happiness came, they were quite literally drained from me. Luckily, as I lost all control of my bladder I was still in the paramedics’ ‘body-bag’ so it was somewhat easy for the nurses to clean up. Although, apparently not easy enough, since one of the nurses asked me to stand up so they could change the bed. If I had the least bit of emotional strength left in me I would have screamed at her “I’m f–king paralyzed b-tch. Do you pay attention at all?!” (My apologies for the ill-mannered thoughts)

But I didn’t have the strength, so I remained silent- perhaps mute- at my utter embarrassment and disdain for my own body.

Shortly after, my dear family friend “Uncle” Bob arrived after hearing the news through my mother’s tears in which she will never admit existed. Bob was my saving grace. I always tell everyone I’m ok alone, I don’t need anyone in the hospital with me, etc. And honestly until that night- I was fine alone. But that night, everything changed. This one time freak accident/illness had recurred…and that made it real.

It was more real than the first hospitalization almost a year ago to the date, where I spend 16 days including Thanksgiving on the Neurology floor. It was more real that all the steroids that caused me to gained almost 50lbs. And it was even more real than all my plasmapheresis and chemotherapy combined.

It was devastating.

———————————————–

Not to be dramatic by any means, but this is all I can tell (re-live) for tonight.  Thanks for reading, thanks for caring. I will try to finish up this experience tomorrow.

-Becca
XOXO

The SCARY part of being SICK.

Nov4

I wrote this the first week in November (11/4/2012) but I forgot to publish it.  Here you go :)

So, Friday night I went out with friends. I decided I was well enough I could drive down to Denver to have dinner. Then I went to a (an after) halloween party, because my friends were going. Not a big deal, I had one drink… more of a social gathering. Somewhere between dinner and the party I got a headache. I took some Advil, and tried not to think about it. By the time I got back to my friend’s house, my headache had gotten significantly worse. So I took an extra Morphine. Problem is- they are extended (NOT instant) release morphine- so they don’t really work for acute symptoms. After an hour or so of laying down I called my mom to come get me because I couldn’t drive home (from a combo of medication and a headache).  Anyways, she gets there to pick me up and we decide that due to the severity of my headache- and the fact that I was hospitalized last time I had one- that I’d suck it up and go to the ER.

I get to the ER and I’m pretty nauseous from my Migraine headeache. They took me to Triage and I demanded a ‘barf bucket’. Soon after I was in the waiting room, dry-heaving. But it wasn’t normal dry-heaving. I ended up figuring out it was actually esophageal spasms. What that means, is each time I felt like I was going to throw up/had dry heaves, it was continuous. So I couldn’t take a breath of air. Basically it was like the opposite of swallowing. My muscles were just pushing upwards, so my throat wouldn’t open up for me to breathe. My face was turning all shades of red and probably purple and blue. It was so bad- I remember the old man across from me in the waiting room saying “Come on Becca! Breathe! Breathe!”.  It’s kind of funny now-but sad at the same time. I guess my mom was telling me to breathe in a similar fashion, so he felt it appropriate to join in. It’s all a bit vague to me, because I was SO sick. The next thing I remember after the stranger rooting for me to breathe, was climbing into a bed that they actually brought OUT to the ER waiting room for me. I’ve never ever seen them do that… and I’ve been to the emergency room a lot. At the time I was very thankful, because I could barely breathe, much less walk more than a step back to a room.

They took me to room 6. That’s all that I remember until I felt the pain from a spinal tap, which was probably around 6 hours later. I was curled up in a ball in a bed, barely coherent, but I remember the needle in my back being quite painful. I’m probably the only 24 year old I know, who has had 3 spinal taps within a year!

From what I have learned, after they wheeled me back to my room, they put an IV in my right arm AND in my left arm- just in case they needed both. I was incoherent could not say my name, where I was, or respond to simple commands such as squeeze the doctors with my hands, or move my feet. I’m really not sure what sent me on a downward spiral so quickly, maybe a lack of oxygen?… or just the severity of the pain? They immediately gave me phenergan and benadryll to ease the nausea. It did not help my headache so much, but made me sleepy- which in a way was helpful. I also ended up with two doses of zofran (8mg) and two doses of dillaudid (for pain).  Due to my neurologic symptoms (and general unresponsiveness)  the doctors (yes- plural) decided to give me a CT scan of my head. They thought I might have bleeding in my brain, or a stroke. Apparently my nurse, Kit, remembered me from last time I was in the ER just a few weeks ago. Actually a lot of the nurses/doctors remembered me. Anyways, the ER nurse was so concerned that he went back to the CT Scan with me, and stayed the entire time- over an hour.

Small but dangerous! (My 6 lined up lumbar punctures…) OWW.

Luckily that turned out fine, and some time later I had the Spinal Tap (aka Lumbar Puncture). I had my mom with me, who was able to judge things and fight for me. She told them if they were going to do another spinal tap- my third this year- that they had better call my rheumatologist and ask her what tests she would like performed. Good thing, because she ordered lots of “odd” tests that the ER doc had never heard of.

Looks small, until you realize each of those holes was into my spinal cord- you know the NERVE CENTER of the body! Pain doesn’t begin to explain it after the 4th or 5th timeUPDATE: So, I got the spinal tap... 6 times! Each time more painful than the last. (NOT Normal.) I forgot to mention I couldn’t sit up for at least 4 entire days. I had to lay flat or stand up (including to eat. Because of the immense pain sitting would give me, and not to mention the literal instant migraine. It was a hell of a few days… I was starting to think they had cause permanent damage when the 4th day rolled along and I could still barely move without agony. Luckily in the next few days the pain dissipated. Here’s my ‘holes’ (each one INTO MY SPINAL CORD)

They ended up letting me go home way later that day, when my labs came up ok. My labs were actually all over the place (Eosinophils, Lymphocytes, and Erythrocytes for the most part out of whack), but nothing acutely severe came up I suppose. I did have RBC (Red Blood Cells) in my spinal fluid- ABNORMAL. But we have come to the conclusion that since they stuck me so many times, that there was blood transfered into my spinal fluid.

So now, I have an appointment with an Immunological Neurologist  early in December (referred by my Neurological Rheumatologist (CNS Rheumy)). This should hopefully get to the bottom of these attacks, along with another strange symptom I have been experiencing.

NEW SYMPTOM: Every once in a while (a few to several times a month) that I remember, I will wake from sleeping in an almost seizure like state. My entire body is shaking somewhat violently, I can see, but I cannot talk or move at all. I try desperately to move my hands or anything, but nothing moves until the ‘episode’ is over.  I almost called 911 the other night when I was home alone. It is absolutely terrifying. And the strangest part is that I THINK it has something to do with laying flat. Whenever this new problem occurs, it happens over and over for a couple hours. As soon as it’s over I sit straight up and try to compose myself. But I have noticed, if I try to lay back down- even if I do it slowly- I slip back into this violent shaking state. My head shakes the most. My mom has walked in the room when it was happening twice now, so I KNOW I’m not dreaming it.

Has anyone else ever heard of anything like this?? I really do not like it at all.

Hope everyone is doing well… and looking forward to the holidays!

-Rebecca xoxo

Lupus— it’s a part of me.

Oct22

Sooo, in recent news, I have lupus! No surprise here. But the past few months, in fact, most of the summer I have been doing really well. I have been having some weird stomach problems off and on over the summer- and was considering setting up an appointment with a GI doctor. I assumed it was just related to my lupus somehow- because it seems like everything is… Between nausea, pain, and other various unpleasant stomach symptoms, it was just getting to be enough. But before I had time to get it really checked out, it brought itself front and center.

Long story short- I lost my appendix last week! Well, technically it was taken from me.
(You can see my appendix HERE)

Good news: I don’t have appendicitis!
Bad news: I still had to have surgery.

It all ‘started’ Friday morning where I had an appointment at the Family Doctor, where my mother made an appointment for me because of the stomach pain I’d been complaining about, because she was worried and tired of no answers. I thoroughly expressed my unhappiness about the appointment- stating they wouldn’t be able to solve anything regarding my stomach- as no one had as of yet. Turns out my family dr. thought it was serious enough she wanted to send me to the ER in case I had appendicitis. Ugh… so much for going to work on Friday!

So I went to the ER nearest my house upon recommendation of my family doc- who called them to let them know I was coming. My symptoms were severe cramping, sharp pains in the lower right quadrant of my stomach etc. So I went to there, and from there it kind of becomes a blur. I was pretty nauseous, and I guess I was dry heaving a lot. It got so bad that I actually stopped breathing twice, and was turning purple. I don’t really remember that part that well- other than the fact that it hurt my face and my stomach terribly and that I couldn’t breathe. It got pretty hectic from there, they ended up putting a breathing mask on me, and using some of the equipment behind the bed in the ER to keep me breathing. I’ve never actually seen that stuff used! Once they stabilized me from the nausea/ lack of vomiting,  they did blood tests, exams, the whole work up- told me I looked good and sent me home on medicine for my headache/stomach- Reglan and Benadryl   [On a side note- my family and I have come to the conclusion that no matter how small my medical ailment may be, that from now on I have to stay within my system of doctors (UCH-University of Colorado Hospital) rather than choosing other places over convenience. It's the only thing that makes sense, given the complication, complexity, and frankly uniqueness of my conditions.] ANYWAYS- So I went home, as usual, with no answer. Just temporarily medicated to mask whatever problems I was presenting. I suppose, with me having lupus, the docs just chalked it up to another piece of the disease-not feeling well. I went home- and went straight to bed, as I had had an incredibly tiring day that not only did I feel was wasted, but I stopped breathing twice and the doctors barely noticed. I pretty much felt like I didn’t matter or belong in the ER with my stomach pains.

Turns out, the next day (Saturday) I woke up, feeling even worse. Terrible pains in my stomach, to the point where it hurt to breathe. So my dad drove me to the correct hospital (UCH @ Denver-30 min drive south) Saturday evening after I was sick and in pain all day long. I threw up the entire way to the hospital, and when I got there- they actually got me back and to a room quicker than I’ve ever experienced in that ER.  When I presented to the ER my BP and heart rate were high and my oxygen was low- in the 70′s. They immediately started me on dillaudid, phenergan, and oxygen. From there, I don’t remember a lot… just being in pain, getting scans, and being ‘admitted’ to the hospital, but there were no rooms so I was somewhere in the back of the ER for a day or two. At some point I got a room, I’d say by Monday or Tuesday, but I was really sick so I have a hard time remembering. There were a lot of doctors coming in in groups (teaching hospital) doing exams on me, and I do remember they said my appendix looked perfect in the CT Scans. I couldn’t have cared any less if it was my appendix or not… all I knew was that it hurt very bad, it was making me very sick, and they needed to figure it out. So thats what I told them. Day after day. They told me the only abnormality they saw was some ‘stranding‘ on my right ovary, which could indicate a number of things- most likely not severe. Problem was, they cannot use IV contrast in CT scans for me, because I’m allergic. So they cannot see very specifically into my abdomen. 

Eventually, the doctors, rheumatologists, and surgeons, came to some sort of weird internal struggle on whether they should do surgery on me or not. It seemed to me that just about everyone wanted me to have surgery- except the surgeons! Strange, I know. But I guess they were worried they would go in, and not find anything wrong, and then just cause me additional trouble (for ‘no reason’) regarding healing from the surgery due to my medications and Lupus. After a few back and forths between the surgery team, the primary care team, the rheumatology team, and a big ‘push’ from my dad- the chief surgeon came in my room one morning and said he’d do the surgery as an ‘exploratory appendectomy’, where they take out my appendix (regardless of it’s condition, and then look for any obvious further problems) as long as I knew and understood the consequences.

I was to the point where I was so tired of the pain, I didn’t care if they took out all my organs… I just wanted them to fix it. And I KNEW they would see something wrong if they looked inside. So a little after 9pm on Tuesday night…. they did the laproscopic surgery with 4 holes- two in my belly button, and two more about three inches below the one before.(You can see my appendix HERE)

The outcome was a relatively unremarkable appendix, and about 20 cc’s of bloody material from a suspected large hemorraghic cyst on my ovary that hard ruptured and caused bleeding into my open abdomen. Most of the blood had been absorbed into my body, but this was frankly too much and too gunky (gross- I’m sorry I know) to be absorbed into my body. So there was the source of all my pain! Apparently I’d had a large hemorraghic (blood filled) cyst that had cause the ‘stranding’ on my ovary and then at some point ruptured- leaving all this free fluid and cyst leftovers that needed to be cleaned out of my open abdominal cavity. (Note: normally there should be no fluid in your abdomen- outside of your organs!). It is very rare that a cyst ruptures and leaves remnants (especially so much blood) in the abdomen…so this was not even on the doctors mind’s as an option to consider to be causing my sickness.

OF COURSE it’s rare. Rare should be my new middle name.

I got out of the hospital on Thursday afternoon, feeling relatively well. My pre-surgery was gone instantaneously after the surgery was completed! And all that’s left now is the post- surgical incision pain, etc… but that is manageable :)

So, ultimately, I feel lucky that the doctors went in and did the (what turned out to be necessary) surgery- and I wasn’t left suffering for weeks longer.

Even though this particular ailment had nothing to do with my SLE Lupus, I’m surprised how much it came up in the Thanks to my dad’s stern push- and my rheumatologists’ fighting for me, knowing me as a patient- I am at home and recovering well!

I even have a picture of my appendix! (I was lucky enough to convince the docs to take a picture of it!). You can see my appendix HERE. Haha, of course I would ask for a picture of my organs. Hey… if they are going to take it out I might as well see it! I will make sure it is a linked photo though, so you have the option to click it. Until then, xoxo

—Becca

Related articles

My Symptoms (PHOTOS)

Apr12

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

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

>>> My Symptoms (PHOTOS). <<<

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

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

Productivity and Progress!!!

Dec17

Today I went to the Physical Therapist (as usual- Mon, Wed, Friday until March 2012i) and the ‘Orthotist‘  came by I got fit/casted for a leg brace that should enable me to WALK!!!

Check it out, he actually made a cast of my leg –>

Since I have fair control over my hip joint, the ‘brace’ (which will be molded to my thigh and calf areas)  will have hydraulics at the knee joint allowing me to bend my knee up to 30 degrees and then lock, simulating or initiating walking.  I think it will also have metal bars that run down both sides of my legs in addition the the hydraulic knee.

It will take a week to make- AFTER insurance processes it that is, so I don’t know when I will actually be getting it. However, I did get to pick out the color!!! And it will be a very pretty soft pink colored plastic. Its called a KAFO brace.

 I believe it will look something like this->
(but instead of all the grayish stuff it will be pink- maybe?)

So, that was an unexpected but super-exciting visit, because I wasn’t expecting to get fitted for that until next week!!

THEN, I had an appointment with my rheumatologist.  He is an AMAZAING doctor, and a very very busy man, and if he weren’t who he were I don’t know how I would have dealt with today. Haha- let me explain. My appointment was at 2:15pm. I left his office at 6:15pm. Now don’t let the wait give you the wrong impression- he gives meaning to the phrase “Worth the wait”… but today was a little excessive. Anywhoo, I’m certainly not complaining. I learned a lot. I got a cortisone shot in my hip! to hopefully remove some of the chronic pain. We are hoping the pain is ‘bursitis‘ secondary to the inflammation of my joints, etc. My hip still hurts, but I’m definitely going to give it some time and see how it works.

So, here is what I found out today:   (I apologize in advance if it gets confusing or repetitive and for the big medical words)

I learned (from the rheumatologist telling his intern of the day) that I have a very rare symptom of SLE lupus- in which you may see 1-3 cases per 1000 patients. Apparently lupus can most severely affect two main organs: the kidneys or the brain/spinal cord. Mine chose the CNS (brain/spinal cord). Apparently I have an immense amount of inflammation [Transverse Myelitis] in my spinal cord, specifically at the L1 level- where the lesion is located. According to the doctor, “only a handful of patients have Vasculitis with Systemic Lupus Erythematosus” (SLE). ….and I do.   

SO the rare  part of it, is associated with my hyperreflexia (basically overactive reflexes-aka if you do the hammer test on my knee I will probably kick you…hard).  I have this hyperreflexia due to the tranverse myeltis (inflamation of my spinal cord).  And according to the doctor, in general, the people with myelopothy who “survive“  (which I am hoping means recover) are the people who receive CYTOXIN. Which is the chemotherapy drug I got in the hospital! (Good news for me).

I will be scheduled to have the Cytoxin Chemotherapy Infusion for 6 more cycles, starting next week.  :) !!! Now, don’t get me wrong… I’m NOT excited to have to go through 7 cycles of chemotherapy- it’s a very aggressive treatment for lupus- but I am excited that it should lead me to recovery. Meaning, I can walk. I can drive. I can do normal things I want to. (if all goes well).

OOOHH  and I can’t forget to mention I am officially no longer on 80mg of prednisone a day!!!  I am down to a whopping 60mg per day.  Still a huge overwhelming amount, but I’ll take whatever decrease-age I can get from that evil drug (which happens to be saving my spinal cord function).

AND if all does go well, once I am “stabilized”  (ETA: 6 months) the plan will be to switch me over to CellCept a more “user-friendly” immunosuppresant drug. …Which from what I read, may eliminate the need for steroids.

We will just have to wait and see.

So, in a nutshell, today was a wonderful day. (I think!!!)