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Handicapable

Jan28

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

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

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

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

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

Just a thought.

 

XoXo Becca

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

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

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30 Days of Truth- Day 1

May30

30 Days of Truth- Day 1- What do you hate about yourself?

What I HATE about myself?? Hate is such a harsh word! But if I had to come up with something, I’d say I hate how I cannot quit while I’m ahead. I should know by now that I have a limit on how much I can do. For example, 3 days of waking up early and doing fun stuff non-stop until late at night. The drinking with family and friends probably didn’t help either. But I have noticed a pattern in my behavior. That pattern is, if I do lots of stuff, for an extended period of time, I will pay for it via my Lupus. First, my grandmother came in early May. We had tons of fun, planted lots of flowers and vegetables, and had fun for days and days. Well, a few days after she left, I was hospitalized (of which I wrote about in the previous blog).  I got out of the hospital and within a week my cousin and her husband came to visit. We wanted to give them the ‘Colorado experience,’ so went out to eat at a restaurant in the mountains, we took them to Red Rocks amphitheatre, and went to the casino….all in the first night! I also took them up to Estes Park, and Rocky Mountain National Park, Old Chicago to have drinks with friends, hot tubbing, and a BBQ. Well, by the day they left (Monday), I could barely get out of bed because everything hurt so bad. My wrists, elbows, knees, and ankles were all swollen and extremely painful. My dad had to help me walk downstairs because it felt like I was walking on two broken ankles. Now, I do have to admit that I had a bit to drink the night before, which probably compounded with the fatigue and lupus symptoms. By Tuesday I could walk alright, but I stayed in bed the entire day due to extraordinarily painful stomach cramping and spasms. Which is the same thing that put me in the hospital a little more than a week ago. The only reason I didn’t go back to the hospital is because I just had a full workup and knew I would be ok. So I loaded up on the stomach cramping medicine (doxycycline) which helped minimally at best. It wasn’t until I took two of my morphine pills that I was able to function a little, and went downstairs to make some food to eat.

I was wondering, if anyone who has lupus has this type of stomach issue. It doesn’t have to be accompanied by an ‘upset stomach,’ but can be. The way I’d describe it is like gas pain x 50….or more. And it’s throughout my intestines. A friend and I call it the demons in my stomach, because sometimes you can see it spasming all over. The doctor in the hospital thought it is most likely inflammation in the lining of my intestines, kind of like pleurisy of the lungs…which IS a common lupus symptom.

Anyways, I went to my new primary care physician today and I absolutely love her. Even though I was 25 minutes late (oops!) she sat with me for the better part of an hour, listened to all of my crazy history, and actually seemed to comprehend it and take it all in. She changed around my sleeping medicines because I was concerned 3 different medicines were too many. So now I am going to try 2mg of Klonopin every night instead of Ambien, Klonopin, AND Trazadone. She also refilled my morphine— thank goodness! (I need it worse than ever with this new stomach issue I’m having). She gave me the 30mg extended release for daily use and 30 pills that are 15mg of instant release for breakthrough pain. She also changed my stomach spasm medication to something way more intense, called DONNATAL. Hopefully it will work better, but I don’t pick it up from the pharmachy until tomorrow. So I’ll have to let you know on that one.

My first physical therapy appointment (evaluation) is tomorrow, and hopefully doing physical therapy again will help relieve some of my hip and knee pain. I’m excited to go to the physical therapy appointment, because they will be able to tell me what kind of workouts other than just yoga that I can do at the gym.  Because I am ready to work out and get into super good shape! I have a new goal: to climb all 52 of the 14′ers in Colorado. [for those of you that don't know, that's all the 14,000+ foot mountains in the state]

Back to the subject of what I hate about myself… I hate how I just can’t quit while I’m ahead. As I was saying above, I have definitely noticed a pattern. I will just go, go, go, and I keep going, until I’m falling asleep at the dinner table- literally. Then I’m in bed for days because I just had to have fun with everyone else. I need to learn my limit, which I am quickly doing.  Although, health wise is not the only think I don’t quit while I’m ahead with. I typically talk myself into a hole and wish my foot into my mouth!!! lol.  Hate is a strong word, but I guess being too determined is an alright thing to have to hate about myself.

What about you guys? What is something you hate about yourself? Hopefully nothing! But I’d love to hear your thoughts!

Hopefully the physical therapy appointment goes well tomorrow. I’ll write about it! Until then, ttyl!

xoxo Beccaboo

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

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!

Lupus’ Sucky Symptoms

Mar19
MONDAY, MARCH 19, 2012 AT 10:19PM

I felt relatively well today!!! I got up between 10-11am, went out to get breakfast and pet food with my dad, did a minor amount of grocery shopping, and ended up home late afternoon. At some point I started itching. My ‘new’ stretch marks :( started itching. Then I itched all over. Still do. I’m not sure if anyone who reads this knoew about or has lupus, but is this common? Or anyone with gross stretch marks? I feel like they hurt and itch as they are growing in. Today they have become almost fuschia. It is awful. From my belly-button down, and then my hips, and top half of inner thighs. Lupus is SO not pretty.

Anyways- after all that- that’s not my new symptom. I ended up taking 100mg benadryl to try to soothe my insatiablly itchiness, and when I woke up from my benadryal nap EVERYTHING hurt to touch. And still does. Kind of like when you have the flu- and your whole torso/back hurt like a giant terrible bruise? Well, thats how I feel. Like everything touching me is a punch. I looked it up, a little worried, since it seems a bit different than flu pains, and what do you know, lupus is a common cause of this. I guess it’s through the same mechanism as fibromyalgia. But I had no idea. I wonder if this means I’m going into a ‘flare’? I sure hope not. Hopefully it’s just a temporary stress induced symptom and will pass soon…along with my neverennding headache!

On a different note- I am still trying to figure out a subscription/follower link, so bare with me. I might be changing a few things up logistically and the way things look. Or maybe not….

We will see. Please comment if you have any tips or thoughts!! XOXO