Tag Archive | steroids

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

Typical Day In The Life Of A “Loopie”

Mar5
MONDAY, MARCH 5, 2012 AT 5:25PM

Today was a “dictionary day.” I went to sleep at a decent hour last night, midnight maybe? But I didn’t couldn’t get up until 3pm. I take that back. At some point I got a bowl of cereal, which I spilled half of on my comforter. [If you don’t know what I mean by ‘dictionaries,’ refer to one of my very first blogs- where I described the feeling on my body when waking up.] You see, because I can’t stand well, I spend lots of time in bed doing things, including eating. I know, it sounds gross- eating in bed. But being so immobile, it just became very convenient. Now that I think of it, if I want to get rid of my ‘steroid weight’… I should just not eat anything in bed anymore. Not only is it cleaner and more sanitary, but I would barely eat. Haha. I would have to go downstairs and eat a meal. Not really a big deal, but it will make a difference I bet.

Anyways, as I said, today was a dictionary day. So, I got nothing done. I hate days like this. But I’m glad  I have a name (LUPUS) and reason to tag along with it instead of just‘lazy’. I even missed physical therapy :( That’s the first time I’ve missed it yet. So that was disappointing. I also have a list of things to do that now I have to put off until tomorrow. Including calling my academic advisor at the college I am going to take courses at. It’s an online college, which seems most fitting for me right now. I would take some courses at a ‘real’ (not online)  college, but since I have so many credits completed from my 4 years at Colorado State University, I only need like 2-3 semesters worth of credits to get my Bachelor’s degree in Psychology.  So I have a lot to do to get that all set up. I am pretty excited about it. It will give me a purpose for a little while, since I’m not allowed to work, and can’t attend classes at a college right now.

However, it’s almost 6pm, and the dictionaries are gone now. I feel totally normal except for the usual headache. But who wouldn’t have a headache after being in bed for 15 hours! Ughhk.

I’m going to cut this blog short and go make something for dinner after I work on my recipe book a for a little while. And I’ll eat downstairs, at a table!!! Like a normal human being.  Man, I am lame… haha.  THEN I’ll get ready,  because I’m going to ‘go out’ for the first time in sooo long!! I met a super nice chica at the local pub I go to, and we are going to meet up there tonight. I met her last time I went theree, and she showed me how to jailbreak my iphone- so she’s gotta be pretty cool right? :) Anyways, we are meeting up at 10pm- so this will be a good test of how much Lupus really affects my life- and whether or not I can actually have fun every once in a while!

Wish me luck!

-Becca
xoxo

Lupus ❤ Lupy/Loopie Lady!

Mar3
DateSATURDAY, MARCH 3, 2012 AT 12:26AM

Today is a great day!!! I found my glasses!! They are brand new super-cute Vera Bradley glasses, and I lost them about two weeks after I got them! Now, two weeks later… I found them and I can seeee! :)

———

So, it’s been a while. I’m going to try to start doing this (“blogging” or journaling) very regularly, I’ve just had a crazy past few weeks I guess, and I got all involved on switching over my blog to my own website- http://www.lupylady.com – if you didn’t notice. :) So lots to talk about.

First of all, since I made my new ‘website’. I can make links to other pages I make. Which I fully plan on doing. In the next few weeks you can look forward to “30 day’s of truth,” “Things I like… quotes I like” “About Lupus,” “Healthy Recipes I like”, “Couponing”…possibly.  Maybe more? Got any ideas?

So let’s see what we need to talk about…  My health recently, life in general, lupus: what I’ve learned personally and elsewhere. Before/After photos, other photos— up on the “photo” link. Learn with me… The book I’m reading- chapter summary page?  Lotsa stuff.

Let’s get on with it…

  • My health recently- stretchy!

    Great! For the most part I haven’t been that sick. I have been feeling much better than I started out. Occasionally, I have getting bouts of fatigue, but that’s nothing new. I was in the hospital for bronchitis, but I think I may have blogged about that. It was just a couple of days. “Mild” photo of inner thigh (sorry, icky)——>

    That’s     the point when my stretch marks began…or at least, really started to show up bad. And let me tell you, they are BAD. So I am the lucky recipient of dozens of huge, lengthy, red, itchy, indented, severely unattractive stretch marks. Ok, I think it’s more than dozens. If you want t see the gruesomeness, I may post a few pictures for ‘educational’ purposes. But they are truly terrible, and I’d say, the 2nd worst symptom of my lupus diagnosis. (First, being loss of function in my leg). Unfortunately, my skin is so thin now, that you could pinch me and it iwould break skin :( But I have high hopes, that as my medications decrease (I’m down to 30mg of prednisone now!) and my health increases, that this willl all dissapate and be a distant memory.
  • [Warning: Technical rant]—>  Lupus is NOT pretty. And me getting fatter is NOT the cause of my hideous purple stretch marks. So, corticosteroids (prednisone) is the best anti-inflammatory medication my body can buy. BUT, it has lots of terrible side effects. Most common- weight gain-which I THOUGHT was the cause of my stetch marks (aka striae distensae). APPARENTLY  the steroids release excess “glucocorticoid” hormones throughout my bloodstream… which are responsible for the stretch marks- NOT the stretching!!! Skin stretching, can play a role in the direction they run and  form, but it is not the CAUSE. ANYWAYS, I thought it was interesting that I have these awful marks not just because I got fat!    [End technical rant :) ]

OTHER than all of that skin stuff, I’m doing pretty well!! I have my 5th round of chemotherapy scheduled for next week (the 15th)…. and I should only have a couple sessions left. By then, I think my steroid dosage  should be low enough that my low immunity should start to get better and hopefully I‘ll have near normal immunity! Maybe better than ever :)

  • Other Lupus Stuff!

    Not to be a downer, but I have a complaint. I am getting soo tired of people seeing me with my brace and asking me either 1) What happened?? or 2) Does that hurt?My answers 1) Spinal cord injury & 2) Unfortunately, yes.

    It’s just so complicated to answer what happened. I mean… really they don’t want to know. And does it hurt?! What kind of dumb question is that. Note to yourself: if you see someone with a cast, brace, etc…. don’t ask questions like whether or not it hurts please.

That’ll do for now, I am going to work on photos up in the photo link. I’m going to post some before/after pictures, in addition to several other ‘themed galleries’ for you to look at if you’d like.  If I don’t fall asleep, I will try to start up my ‘30 Days of Truth.’  So, lots to come. Be sure to check out the Photos link above.

See ya later!

XOXO Becca

Productivity and Progress!!!

Dec17

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

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

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

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

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

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

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

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

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

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

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

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

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

We will just have to wait and see.

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