Tag Archive | health

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.

———————————————–

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

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

Questions for YOU!

Sep27

 

This blog is for you my fellow lupies… or generally ill immuned.

Do you ever get mad??? Do you ever get angry??

Of course you do. But I mean at your illness. I find myself getting more and more angry at my lupus. Not only the lupus, but everything that comes along with it. People either judge me incapable, or feel sorry for me…and I don’t want either.  I appreciate when people say how far I’ve come, I really do. I have tried very hard and overcome huge obstacles in the past year to get where I am.

But when people pity me– no thank you. I’m still human just like everyone else, I just fight harder.

——–

Back in December 2011. Too pretty? For a wheelchair? Come on, don’t even get me started!

However, I have to admit… I used to be one of ‘those’ people. When I’d see someone in a wheelchair, I didn’t treat them any differently, but I felt a little sad inside my soul for them. Why? Because they had harder lives than I did…or so I thought.  Truth be told, they were probably happier and more content with themselves than most of us capable of walking. If there’s one thing that chronic illness has taught be is to be more humble. I don’t know half of what I think I do about anyone or anything. I’ve always heard the phrase “Don’t judge a book by it’s cover” but it becomes more true to me every day. One thing I’ll never forget is going to an Easton Corbin concert, and I was in my wheelchair at the time. As I rolled by a group of ladies talking, I overheard one say, “She’s too pretty to be in a wheelchair.”

WHAT?!?! How does that make any sense? If I could have I’d have stood up out of my chair and walked right up to her and asked her to explain exactly what that meant. Bad things happen to good people. Good things happen to bad people. You can be pretty, ugly, white, black, blue, or green- we are all humans and should ultimately all be treated equally. Right?

I’d love to hear your thoughts.

(Sorry in advance for the rant, I will give an update of the past couple months in a day or so. But it is late and that will be one long post.)

 

Where Am I Right Now?

Mar19
DateMONDAY, MARCH 19, 2012 AT 2:42AM

Such a multi-faceted question. Right now I am in bed. In Philadelphia, PA. I haven’t gotten out of bed since my chemotherapy treatment on Thursday morning (3/15)…other than to get a drink so I could take more medicine, go to the bathroom, or today- make a meal. For the first time since Thursday- I went downstairs and cooked up some macaroni all by myself. Which I couldn’t eat, because I was too sick to my stomach. Where am I? I am hopeful tomorrow will be a better day. I’ve been telling myself that since Thursday and I think I slept an involuntary 60 hours out of  the past 72. However…. I’m awake, and I’ve been awake for more than 6 hours! And I am feeling better than I was. So that is promising for tomoorrow! Hopefully I will be able to  get up around 10am and actually be productive.  (late, I know- but Friday I got up at 10PM!)  Some people lay around all day out of laziness, and/or love it but I CAN’T handle it anymore! Tonight, when I stand up it only feels a little bit like I havepudding running though my veins. Yes, pudding. That’s the best way I can describle it. Or as if my organs are made of lumpy jello.

The super weakening jello-like, pudding feeing in my veins, has been downgraded to non-contsant. So hopefully…tomorrow I can fix up my room/finish washing my immense amount of clothes to get ready for the big move.  It’s just a couple of weeks away. I’m hoping we (my dad and I- my mom is already in Dever working) can get packed and out of here in less than a month so I won’t have to do any more chemo! I’m guessing the no-chemo part will be a failed plan, but I don’t know how well I can handle another round of it. They might as well just send me up to a hospital bed next time until I recover from the treatment.

Back to ‘Where am I?’ I am a recovering newly diagnosed lupus patient- not letting lupus define me. I’m determined to get back to good health- better than before maybe. I’ve been living in Philadelphia for a year, where I moved back in with my parents to take a hiatus from college. But I am moving to Denver, CO. I’m moving near where I just came from almost exactly a year ago. It’s weird though, because I feel more now that I’m moving “back in” with my parents than I did a year ago. I’m not sure if it’s because I’m more reliant on them with money, healthcare, housing, etc, or what… but I feel like I’m jusst now moving back in my parents. Weird huh?

I am excited to move. I am sad to leave the girlfriends I’ve met here, but excited to get a fresh start. Now that I have a diagnosis, a name and a treatment plan for my lupus- I’m ready to get ON WITH THINGS! Where I am right now, is not where I am staying.

When I get moved, I’m going to learn to the piano. I had lessons when I was younger, I know how to read music and all. I love singing… so I think it will be a soothing release, and who knows, maybe in time I’ll post something if it’s worthwhile :)

I’m also going to start back my college classes so that I can finish off my degree and work on my masters. I’m certainly not giving up on anything. Just trying harder.

In addition to getting serious about the piano (in my case-keyboard), finishing school, I’m joining Lifetime Fitness ASAP when I get to Denver, getting a trainer, nutrition program, and a healthy routine. I think it’ll be easiest to make these adjustments as I’m already in the midst of change. Right? right.

I know, totallly random post again- but I had to say something to feel alive again! I didn’t even open my commputer for the past 3 days. Now that’s a big deal.

Ps- Chemotherapy sucks. But I’m gonna kick it’s butt tomorrow doing laundry, cleaning, and doing some minor shopping. Go me!!

☣ Cytoxan ☣

Dec21
Chemo doesn't HAVE to be for cancer! (I imagine that it will appear a little something like this- my first chemo infusion back in November.)So, tomorrow morning, in right about 12 hours I will be getting the second dose of Cytoxan (Cyclophosphamide) Chemotherapy infused into my veins.  I am excited in a nervous sort of way. In a way, I’m SO happy I’m actually getting treatment for a disease that has been ‘silently’ tearing me apart for so many years… but on the other hand, I’m thinking “Holy CRAP I am about to go get MORE chemotherapy! Why the hell would I even consider being happy?!“I’m not totally sure what to expect… I don’t think I really even had any nausea the first dose I received. BUT I was in the hospital, and being given lots of other medications. From what I hear, it gets a little worse each time- as it builds up in your body, and your body fights for whatever it has left. But I hear different things from different people. I don’t even know if I get an outpatient sort of recovery room, or if I sit in a big room full of other people getting treatments…?  So many questions, but they will all be answered soon enough. I will definitely give an update tomorrow and let everyone know how things went and all my thoughts.I’m a  little disappointed the chemo had to take the place (without rescheduling available) of my physical therapy- but the P.T. said I  will need recovey time, and to be PATIENT and just wait till Friday like a good patient. Haha, I love her to death. She is very well educated- and can handle all of my questions/comments/blabber very well!  Perhaps I’ll be able to find her some small holiday gift as a thank you for dealing with me :)    I truly believe, even with the little bit of P.T. I’ve had so far, it is helping  A LOT.

Anyways, I have a few more things I need to do before I get to sleep for my early and BUSY morning tomorrow! So, i hope everyone has a wonderful night- and happy first day of Hanukkah to anyone who feels that may apply to them!   Happy Holidays as well, even though they are ridiculously stressful and I refuse to go shopping until sometime in probably March now after going to Target today!

♥ Signed, nervously excited,
Becca ♥