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

Dec11

THE FIRST NIGHT:

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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.

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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

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

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

Lupus- [I'm] Stronger than ever!

Oct2

Update!!!!

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

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

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

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

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View from my office desk!

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

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

All good news :)

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

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

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

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

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

So true.

Talk to you soon <3

xoxo Becca

I’m back!!!

May18

I’m back! …in the hospital :(

Note to self: Add iodine contrast dye to my allergy list.  Because anaphlaaxis is not fun. Let me go back a little…

So, sorry it’s been nearly a month since I’ve posted anything. I know I said I was going to write posts more regularly, however- this move back to Denver, Colorado really took a toll on me.  Right before I left Philadelphia I caught a sinus infection. By the time I got to Philadelphia with my dad, I felt so bad, it seemed like I had a sinus infection, the flu, strep throat, and a cold- all multiplied together. The next day my parents closed on their new house, and afterwards,  my mom took me straight to the ER at the University of Colorado Hospital in Denver. Turns out I had acquired sepsis (an infection in my blood) during the road trip, which kills people on a regular basis. And from the sepsis, I got ischemis colitis, where blood flow was cut off to part of my intestines. So I was admitted to the hospital (staying in the ER the entire time) for 4 days. They were pretty nice there, and had a good staff- other than the nurse that blew out my vein!

Blown out vein- looked like there was an egg in my arm!

That hospital ER is/was so hectic, neither my mom, dad, or I ever really want to go back. It was so overcrowded they had dozens of patient beds in the hallways with PERMANENT signs on the  walls labeled “Hall Bed 1″ etc. However there was good news… I got my new rheumatologist immediately, rather than having to wait 6-8 weeks for an appointment. She is very smart and works at the rheumatology clinic I referred to before I left Philly. I’ve already seen her once in between hospital visits, and I have another appointment Monday.

To make a long story short- after I left the hospital with Bactrum and Augmenten antibiotics, I felt better for a few days. THEN I got a terrible ‘upset stomach’ and had to go back to the doctor. BUT I went to the local ER this time instead. Where they said I had C. diff, (Clostridium difficile) – most likely caused by all the strong antibiotics killing off the ”good bacteria” in my stomach- and proceded to give me a third antibiotic on top of the first two. Now, a little more than two weeks after my 2nd Colorado ER visit, I was back in the hospital again. I talked to my rheumatology office Tuesday, and they said that if my stomach was still upset and painful that I needed to go back to the ER. Blah. So I get to the ER, and of course they want to do a CT Scan to rule out anything life threatening such as appendicitis. My scan ended up ok- but right after it I had a severe ‘systemic wide allergic reaction’ to the iodine contrast dye. My face turned beet red, my body broke out it welts, and my airways started closing up in my chest. Luckily this all happened in a hospital, and the ER doctor was quick to give me 50mg IV Benadryl, IV salumedrol (steroid), and an epi-pen shot. Pretty much saved my life. But they still wanted to admit me for my stomach problems, and then adding the allergic reaction to the mix, they really weren’t letting me go that night. So, while in the hospital, I had a colonoscopy and an endoscopy, which apparently both looked ok, but they did biopsies that I will hear back on in a few days. The doctor said he wanted to at least keep me for another day or two- to get to the bottom of things.  So, I got to go home yesterday… but not with a lot of answers :(

The good news to all that is- I got to wear my new hospital gowns. One is pink with white polka dots, and the other is green with pink and white diamond shapes. They are custom ordered and monogrammed from this super cute company called Dear Johnnies. If you are in the hospital much, I highly recommend them :)

So there is a quick update! Just letting you all know I am still alive and kicking :) Even if I was in the hospital AGAIN. But I’m trying to jailbreak my iphone, watch american idol, and type this blog, all while on a ton of medication (even though I have a stingy nurse tonight who doesn’t want to give me the medications the doctor ordered until I try a ‘lighter version’ of everything.  So I will try to write another blog soon, with more information, and hopefully some sort of a diagnosis!

Until then-
XoXo Becca

I’m Still Here!!!

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

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

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

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

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

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

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

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

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

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

Lupus really sucks.

Feb11

 

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

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

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

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

Why was I admitted??

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

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

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

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

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

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

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

The EMERGENCY Room Visit….

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

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

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

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

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

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

Physical Therapy

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

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

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