“OMG You’re in a wheelchair!!”

Hello all,

My friend shared the following question and response from a blog she found and I believe it’s something everyone should see. Clearly people don’t understand what’s appropriate and what’s inappropriate. Or even have a basic understanding of manners. I know so many people in wheelchairs, crutches, or with disabilities that have accomplished so much more by 30 years old that most people will achieve in their lifetime. Just remember, just because someone’s different doesn’t mean they are any less worthy or able to live life to the fullest. 

 

“Questions : “Ur in a wheel chair!!! OMG that must suck. If u don’t mind me asking what happened. P.s I love ur blog

Response: “Do you have any idea how offensive it is to say that? You basically implied my life is not as good/valuable/fulfilling as yours is because I happen to have a disability and use a wheelchair. My wheelchair doesn’t make my life suck, it improves my life and makes daily independent living doable. As for what ‘happened’ nothing ‘happened’ there isn’t some horrible accident or sob story. I was simply born with a condition called cerebral palsy.(And for those who have been in accidents or tramatic event it’s not always a blast to go through reiterating the gory details)””

 

Danielle

Published in: on January 26, 2014 at 9:42 am  Comments (2)  
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Happy New Year!

2 posts in 2 weeks, amazing right? Anyway, Happy New Year to everyone! Did you make any resolutions? Have you already broken a couple? That’s because most people choose resolutions that are either too broad too high reaching. Don’t get me wrong, it’s okay to have a high bar set for yourself, but it has to be reasonable. For example, for most people it’s unreasonable to say “I’m going to make 10 million dollars this year.” So, how do you keep your resolutions? Here are some personal tips I’m trying this year:

  • Break down bigger goals into smaller more frequent goals, go month by month if you have to.
  • Use concrete, specific goals – it forces you to focus better.
  • Set a schedule for those goals – once a month, once a week, etc.

Here are two of my resolutions as examples.

  • “I want to start going to the gym/running/working out” turns into “I will start going to the gym, etc. once a month for 2 months, then twice a week for 2 more, then 3 times a week for the rest of the year.” 
  • “We will save money this year” becomes “We will put away $100 every month for end of year treats.”

These are much more concrete than just a broad statement of working out or saving money and it gives you something specific to keep to. We have more resolutions but I won’t bore you with them. Hope everyone had a happy new year’s eve and has a wonderful and HEALTHY 2014!

 

Danielle

Published in: on January 1, 2014 at 1:46 pm  Leave a Comment  
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Oh the Holidays

Yep, once again I fell wayyyyyyy behind on posting here. My life has been a huge roller coaster most of this year so please excuse my absence. So, the holidays…fun, stressful, and hectic. The latter two are really not so great for lupus now are they? I made it through with only one meltdown which really is nothing so brag about though I think I have most of the plan down pat to avoid such things next year.

Thanksgiving Week and Black Friday – shop online! I got all but 2 gifts done from the comfort of my own home that week. The other 2 I had to actually go buy but not until just about a week ago. Seriously, online shopping = best shopping ever for sick people (or really any people)

Wrapping – start out slow way ahead of time. All my gifts were wrapped by 2 weeks before Christmas and I didn’t have a single swollen finger or knees. Arthritis makes sitting on the floor wrapping pretty difficult sometimes. Just do 1 or 2 gifts a day and you should be fine. You’ll be happy you did this.

Decorating – the same as for wrapping. Slow and steady wins the race, there’s no rush so just give yourself time.

Food – cut down on the sodium and sugar beforehand. You know you’re going to be eating a lot of unhealthy things. If you’re already feeling crappy, flarey, whatever, try not having so much of those yummy things before the holiday dinners. Especially sodium if you’re on prednisone, no one wants to look like a blowfish in a holiday picture.

After all the hub bub is over, take a few days and relax. Cleaning can wait (except, you know, dishes. You might want to clean those so you don’t get gnats or whatever.) Play with your new “toys” and just veg out. Then when you have energy you’re ready to start cleaning. Just take it one room or one half a room at a time with a little break in between. Hopefully, that will help!

I know this is a little late for this holiday season but like I said, these are things I learned this year and now I’ll be ready and raring to g next year. Happy Holidays and a Happy New Year! 

 

~Danielle

Published in: on December 28, 2013 at 4:01 pm  Leave a Comment  
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I’m back (again)!

After another verrrrry long break I’m back again. Since August I feel like for the most part my life has been going non-stop. Passing the bar seemed easy compared to what I ended up dealing with after I got home. My family and I have had some tough times with illness and other depressing issues but what I have learned is where I get my stubbornness and willpower from. Grandma made it to 94 years old despite getting the flu, bronchitis, c. diff., being hospitalized, and having a stroke. She’s almost back to her normal independent self and miracle was really the only way any of us could think to describe it. There were a lot of tears, a lot of prayers, and a lot of family! Definitely know where the women in my family get their fighting spirit. 

That was one major thing to deal with, there were a whole lot more. I’ve almost lost way to many people over the last few months.

Of course, my boyfriend and I decide to start dating and not only does Hurricane Sandy immediately hit, but everything with grandma and other loved ones happened. He’s already seen me at my worst and he’s still here with me telling me he’ll never leave. I love him for that, most guys would have turned around and ran! I’m glad things are starting to look up. My family is getting back into a good stride and all the children have found healthy, loving relationships to hold on to. It’s taken a long time but I think we’re at a high point in our lives at the moment. 

Anyway, with all of that drama and the stress of being unemployed and not being able to pay my bills of course I’ve had a hard time with lupus flares. Until now, I hadn’t had any major flares. Just little ones, you know joint pain, low grade fever, exhaustion, headaches…the usual. About a month ago my heart started acting up so I’m in and out of the cardiologists office this week trying to figure out why. Hopefully it’s just a stronger flare and not fluid or anything around my heart. Today I should find that out so cross your fingers!

I’m off at the moment to do some cleaning and such before I head to the dr. I know this is nothing like my regular posts but I just wanted to post an update for now, I’ll be back to my old blogger self soon! 

Dani

Published in: on February 27, 2013 at 11:10 am  Comments (2)  
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I have a life again!

Or the potential for having a life once again. Basically since April, I’ve been going non-stop.In April, I had surgery again to remove more pre-cancerous lesions that chemo was not working on. What did I learn? The following:

  • No matter how old you get or how many surgeries you have, you will always want those who raised you around – I couldn’t have done so well if my mom and dad weren’t with me.
  • ALWAYS ask for nausea medicine prior to surgery – whatever “magic pill” (that’s what they actually called it) they gave me, I plan on getting every time I have anything done
  • On that note, always get the name of what they give you – I forgot and now I have to go searching through records, fun fun.
  • Surgery, or any other major medical procedure/treatment, shows you who your real friends are – hang on to them ❤

Anyway, the surgery was successful and now I’m on chemo. I’ll probably need another one next year and I’ll stay on chemo for most of my life if they don’t get me off of CellCept. We shall see what happens with that. Followed by surgery, I took finals. This was the first time in law school I used accommodations. I had to convince myself it was okay to ask for them considering I’d had major surgery the week before. Major lesson learned? It’s OK to ask for help! In fact, I did it for the bar exam too and I honestly don’t know how I would have made it through without them. Bringing headache meds was a life saver!

So after finals I graduated and went on vacation. Managed not to flare, woot! Then onto studying for the bar. That experience was hell. I was living alone and in a flare so of course all I wanted to do was sleep. Trying to do 8+ hours of studying a day while fatigued, stiffed, and with a headache was not easy. I had a few meltdowns (again I learned who my real friends are!). Figuring out what was best for me was hard but I managed. Today I found out I passed! Last major lesson of the summer? Listen to your friends and family – they know you better than you might think. When I finally listened to the advice on studying from my dad, I grasped a lot more things I hadn’t been understanding.

And now with that joyous news, I’m off to loosen up my joints with a nice hot shower! I’ll be back soon, I promise no more 3 month long breaks :).

Published in: on August 27, 2012 at 7:31 pm  Leave a Comment  
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I know I do this!

Daily Living With Lupus

Wow! This article was eye opening to me! I totally understand it though. Our doctors may think we are drug seeking if we complain of our pain too much yet we ARE in pain and NEED and DESERVE treatment for it. I found this article on the following website: http://www.upi.com/Health_News/2012/03/31/Survey-Lupus-patients-often-downplay-pain/UPI-63591333210750/

Survey: Lupus patients often downplay

Published: March. 31, 2012 at 12:19 PM

WASHINGTON, March 31 (UPI) — Lupus patients often downplay pain and other symptoms to their physician and family and friends, a U.S. survey indicates.

The survey of 1,000 adults conducted by Roper indicated 87 percent of those diagnosed with lupus report playing down symptoms to their families, while 52 percent said they minimized symptoms to their doctor.

However, 72 percent of physicians surveyed said they did not think their patients minimized symptoms.

“We are seeking further Congressional support for adequate training of healthcare professionals to better recognize…

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Published in: on April 3, 2012 at 12:23 pm  Leave a Comment  

I just had to reblog this poem. SO much of it is stuff that people with chronic illness can relate to!

The rantings of a hysterical hillbilly

It’s Not My Imagination

My right eye’s always twitching.

My legs are filled with lead.

I am forever dropping things.

And they say it’s in my head.

I have six pairs of glasses

With no two quite the same.

And I wear each one on different days

‘Cuz my eyes keep playing games.

I have this buzzing feeling

Deep inside my head.

And a jolt of electricity

Just made my feet fly off the bed.

Sometimes my throat won’t swallow.

Sometimes I pee my pants.

When I ask the docs, “Is this MS?”

They just say “There’s a chance.”

When my tongue went into spasm

It did a u-turn in my throat

And blocked my life’s-breath airway.

The doc said, “Make a note.”

My legs went numb and swollen

And doctors shook their head.

But they won’t put a label on it

Until I’m good and dead.

The vertigo is…

View original post 112 more words

Published in: on January 23, 2012 at 12:01 pm  Leave a Comment  

A fabulous feast

I know posts have been getting farther apart and I apologize for that, my health has just been taking hit after hit. That along with getting ready for finals has left very little time for me to write. Even though it’s a little late, I thought I’d share the recipes I used on Thanksgiving this year. It was the first year I cooked almost the entire feast by myself so I found/created some recipes that were easy to do even with the extreme fatigue and achy joints I had. Most of them can be made by just washing/rinsing one mixing bowl and using that over and over. It makes for a much easier clean up. My plan is to use them year round because they can easily be transferred to other meats and veggies and I hope you enjoy them!

Thanksgiving Dinner

The end result

Slow Cooked Turkey Breast

This is one I’m hoping to try on either a roast chicken or chicken breasts soon. I also think it’ll go really well on certain fish like salmon and maybe flounder. This is made in a slow cooker (if it wasn’t obvious by the title haha) which is an amazing piece of kitchen equipment all lupies – and people short on time – should have.

Ingredients

  • 1 whole bone-in turkey breast, about 6 pounds
  • 1 tablespoon garlic powder
  • 2 teaspoons turmeric
  • 1 tablespoon chopped fresh or dried rosemary leaves
  • 1 teaspoon chopped fresh or dried thyme leaves
  • 2 teaspoons kosher salt (or less if you’re on prednisone of course)
  • 1 teaspoon freshly ground black pepper
  • 1 teaspoon cayenne pepper
  • 2 tablespoons olive oil
  • 2 tablespoons freshly squeezed lemon juice
  • 1 can chicken broth (or any broth you’d like)
  • Mixed chopped veggies – frozen or fresh (optional)
  1. Mix all the dry herbs together. Stir in olive oil and lemon juice until it makes a paste. Using your fingers, rub the mixture under the skin of the turkey as much as you can. Take the rest and rub it on the outside. I suggest doing this part the night before, putting the turkey in the removable pot and covering it with foil in the fridge but you don’t have too.
  2. The next morning, put the turkey in the slow cooker and slowly pour the can broth in around it. Throw in some chopped veggies. (If they’re fresh they can be chopped the night before, if frozen just toss as many as you’d like in for extra flavor.) Set it on high for 1 hour then low for 6-7 hours until fully cooked. I read that for chicken it’s 1 hour on high and 8-9 hours on low. A meat thermometer is always helpful.
  3. Take out, carve and serve! Mixing some of the stock in with canned gravy makes a quick and delicious topping. 🙂

Lemon Garlicky Spinach

This can be done with any veggies you like, the ones I used just happened to be what we eat most often.

Ingredients

  • Fresh or frozen spinach (1 bag or bundle)
  • Half a red pepper (roasted red peppers are very good too)
  • 1 teaspoon lemon juice
  • 2-3 tablespoons white onion
  • 1 teaspoon minced garlic
  • 1 teaspoon olive oil
  • Salt and Pepper to taste
  1. Wash and chop the spinach or if it’s frozen set aside.
  2. Chop the red pepper, onion, and garlic. Mix together.
  3. Heat the olive oil in a pan on low for 2-3 minutes, toss the spinach in. If it’s frozen be careful it doesn’t pop and splatter on you. Cook the spinach for 2-3 minutes.
  4. Toss in the rest of the veggies and cook until everything is tender. It took me about 10-15 minutes.
  5. Serve hot and add salt and pepper to taste!

Mashed Sweet Potatoes

This one is slightly hard to make and is easier if you have someone help with the peeling. My boyfriend peeled and chopped the potatoes for me.

Ingredients

  • 2-3 medium sweet potatoes
  • 1/4 cup sour cream (or 1/4 cup milk and about 1 tablespoon of butter)
  • 1 teaspoon garlic powder
  • Salt and pepper to taste
  1. Set a pot of water boiling.
  2. Peel, wash, and chop the sweet potatoes into cubes.
  3. Put in boiling water for about 40-50 minutes until soft.
  4. Drain and pour in a mixing bowl. With an electric hand mixer, mix in the sour cream and garlic powder until smooth. You can substitute milk and butter for sour cream as well and add more or less garlic if you’d like.
  5. Serve with gravy and voilà!

Easy Oreo Pie

I’m pretty sure I learned this when I was little and it’s the easiest pie ever to make. It’s become a Thanksgiving tradition but it’s definitely good all year round. I also use the same bowl which makes much less of a mess.

Easy Oreo Pie

Doesn't it look yummy?

Ingredients

  • Chocolate pie crust, Oreo is the best kind
  • 1 box Jello Vanilla Pudding
  • 1 box Jello Fudge Pudding
  • 4 cups of milk
  • 1 package cool whip
  • 4-5 Oreos
  1. In a mixing bowl, make Vanilla Jello first with 2 cups cold milk (use package instructions basically). Whisk until it’s slightly thickened. Pour into the crust until it comes slightly up over the mid-line. Pour the rest in a tupperware for a treat later. Let sit for 5 minutes.
  2. In the same bowl, make the Fudge Jello with 2 cups cold milk. Whisk until slightly thickened and pour evenly over the vanilla pudding. Pour the rest into another tupperware.
  3. Place plastic lid back over the pie and place in the fridge for 2 hours.
  4. Take out and cover evenly with a layer of Cool Whip or your favorite whipped cream.
  5. Place 4-5 oreos in a plastic bag and smash them either with your hands or something like a jar. Since my hands bother me, when I do it I use a jar of olives.
  6. Sprinkle oreo crumbles on top and enjoy!

Bread and Stuffing

Making bread by hand is extremely difficult in the first place and even harder when your hands don’t have much strength left or hurt. This year, I bought a 1 hour bread mix – Herb Bread – and it came out great! Same with stuffing, good old Stove Top works and keeps you wearing yourself out.

That was my entire Thanksgiving meal and it came out fabulous if I do say so myself haha. At the end of the day, I wasn’t completely exhausted and was able to have a fun night. Let me know how these work out for you guys!

Published in: on December 1, 2011 at 9:48 pm  Comments (3)  
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Surgery

Hi all! Sorry about the lack of posts, I have lots to catch everyone up on this week and next! I just got out of surgery so I’m out of it but I will be updating ASAP, hope all is week with all of you out there 

Published in: on October 21, 2011 at 3:43 pm  Comments (7)  
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Family <3

I know I haven’t posted in a couple weeks. Sorry! I have a very scary doctor’s appointment on top of all the school work I’ve been doing. All I have to say this week is be grateful for those you consider family. They are always there when you need them the most and don’t ever let a fight or anything at all make you forget how special they are. People take their families for granted and it breaks my heart to see that. Your family will always be your family and love you and support you and help you when you need it!

Published in: on September 28, 2011 at 7:01 pm  Comments (8)  
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