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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:

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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

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

Inspiration from Life

Sep27

 

♥ “When we look back on some of our most challenging experiences, we admit that we wouldn’t trade what we gained from them for remaining the same as we were. Something within acknowledges that during those times when we are pressed against the ropes of life, we learn to become more generous, to forgive, to never give up on ourselves or others. We learn to regenerate, to rejuvenate, to surrender.” Michael Bernard Beckwith ♥

 

My new favorite quote. And essentially my life story thus far!

 

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

Old School

Apr17

Old School

Check out my super awesome new Iphone case!!! I am in love with it… and got it from the (five) dollar store!!!

That’s all for tonight, because in the morning the packers pack up all of my things to be moved to Denver. So I probably won’t be posting again until next week, but I am feeling healthy and am ready to get it over with! :)

Wish me luck everyone! See ya on the other side. xoxo

Quick Update. Life is Good.

Apr14

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

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

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

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

xoxo becca