Friday, May 17, 2013

Lupus Fog

Today I'm celebrating a major accomplishment! First, I need to get some information out there so others can understand just how big this accomplishment is. I know, the anticipation is killing you.

Many people with lupus deal with cognitive deficits. Us lupies call it the "fog". We're not crazy, we're not losing our minds, and we're not old and senile! Please, I'm not even 25 yet.

Lupus can attack any organ, and sometimes that's our brain. We have moments, especially during a flare of symptoms, where we can't remember things, can't follow a thought, or become very confused. It's extremely frustrating, but we learn to laugh about it.

Personally, I have forgotten anything from my name to appointments to how to drive to school. These are things I do every day yet my mind goes blank. It is also hard for me to follow a train of thought. I might stop mid-sentence with no idea what I just said or where I was going with it. It also makes listening to a conversation difficult because details get jumbled in my brain. When it first started happening, I thought it was because I was stressed, but it turned out to be a cognitive symptom of lupus.

The good news is, there are ways to cope with this "fog". Making lists and keeping date books/calendars handy have been a great help. I have to write everything down. If it isn't written, it isn't remembered. Often times I find myself talking through the steps of certain tasks or my to-do list. When quilting, I have to lay out each piece and keep a picture and template next to me so I can remember what I'm making... even if I've already sewn 12 of the same block ten minutes ago. I have to take frequent breaks during any task, otherwise information will collide together and I'll forget everything.

With this being said, nursing school has been a bit of a struggle. Studying takes an extra effort, as does paying attention in lecture. Lectures can last 3-8 hours! With few breaks, the material blends together and I have to go home and re-teach myself the information at a slower pace with more breaks. Clinicals are a whole different story, but they still require an extra few minutes to re-group and I have to jot down everything I need to remember or know about a patient. My classmates and professors don't know about this "fog," or that I even struggle with it as not everyone is affected. However, I have made a huge accomplishment!

I am half-way through nursing school and I have maintained a 4.0 GPA!!! 

 Celebratory drinks! (I'm in the brown/beige).

I battle with the fog every day and I will not let it beat me! So for anyone out there who struggles with a mental haze of any sort, if you learn what you need to help keep you on track, you really can do anything.

Monday, May 6, 2013

Kaleidescope Kit

Dug this kit out last night. Hubby got it for me for Christmas one year, but I've been putting it off because I'm a perfectionist when it comes to points. If the points aren't super pointy, I will take stitches out over and over again until I'm happy. Time to conquer the points!

Laid out all the diamond shapes to see what different kaleidescopes would come out...

Some of my favorites...

Can't wait to get some time to start sewing these! Feels like this could be a new addiction.

Friday, May 3, 2013

May: National Lupus Awareness Month


 For the month of May, in honor of lupus awareness month, I will be doing a weekly posting about lupus. Hopefully spreading the word of this silent and wacky illness and my journey with it. 

Without further ado... 23 Things About My Illness:

1. The illness I live with is... Systemic Lupus Erythmematosus (SLE), otherwise known as "lupus"
2. I was diagnosed with it in the year... February 2013
3. But I've had symptoms since... I was an infant.
4. The biggest adjustment I've had to make is... learning to say "no" in order to put my health first. I'm always one to jump up to help someone else, even if it means sacrificing my time or energy. These days my energy is short lived and sometimes it's painful to help others.
5. Most people assume... that I'm ok. I look and act like your normal 24-year-old, but on the inside I'm dealing with a whirlwind. I try not to let my pain or fatigue show, but sometimes it slips through.
6. The hardest part about mornings are... getting rid of that morning grogginess. Fatigue has been a big player in my lupus. Even with medication I still need about 9 straight hours of sleep at night. With school it's hard to get that so getting my head on straight in the morning can be rough. Sometimes I'm groggy all day, other times I'm groggy for the first 2 hours of the morning.
7. My favorite medical TV show... it's not on TV anymore, but I really liked A Gifted Man. I love the brain!
8. A gadget I couldn't live without is... my bathtub. Soaking in the hot water gives my joints such relief! A gadget not related to health, my laptop. Everything's on it--school work, pictures, notes, addresses.
9. The hardest part about nights are... getting comfortable. Finding that "just right" position when your normal sleeping position causes your joints to hurt. I usually sleep on my left side curled up in a ball, but if my joints are achy, I can't be curled up and I've never been able to sleep on my back or stomach.
10. Each day I take... 7 pills, 2 of which are vitamins/supplements.
11. Regarding alternative treatments... I'm a big believer in alternative treatments. Everyone is different, but I know massage and hydrotherapy help me. The anti-inflammatory diet has done some wonders as well.
12. If I had to choose between an invisible illness or visible, I would choose... invisible. I tend to hide my stress, emotions, and pain as it is. I like to appear "normal" to others because I don't like those pity faces people tend to give you when something's wrong.
13. Regarding working and career... I'm still working on that. Nursing school has been rough. The stress from school put me into a flare that I haven't been able to get out of. Being on your feet for 8-12+ hours a day is a killer on my joints, but I love nursing so far. I just push through and take breaks as needed.
14. People would be surprised to know... that I have lupus. I keep it fairly quiet, but I've noticed that many people think if you have lupus, you have to have the "butterfly rash." Only 50% of lupus patients have the butterfly rash. I'm one of those with an atypical case.
15. The hardest thing to accept about my new reality has been... thinking about the future. It was really hard to have plans dreamed up and now have this unpredictable illness that can change those dreams and plans in a heartbeat.
16. Something I never thought I could do with my illness that I did was... I'm still working on my goal, but I'm trying to graduate nursing school with a 4.0 GPA. It's hard, but so far I'm doing it!
17. The commercials about my illness... there aren't any.
18. Something I really miss doing since I was diagnosed is... nothing. Thankfully lupus hasn't taken anything from me yet. I try to live every day normally. I do miss having some of the energy I used to, but that could just be me getting older.
19. It was really hard to have to give up... sugar! I started an anti-inflammatory diet upon my diagnosis. Sugar causes and worsens inflammation. For someone with a sweet-tooth, that was really hard!
20. A new hobby I have taken up since my diagnosis is... reading. It's not a new hobby, but I've been reading more now than ever. I take a daily 30+ minute relaxation break. I relax the best when I'm reading and journeying into another world with my imagination.
21. If  I could have one day of feeling normal again, I would... go sledding in a blizzard. Sledding all day and coming in soaking wet and having hot chocolate, just to go right back out again. The cold makes it hard on my joints so I only get the hot chocolate part.
22. My illness has taught me... to listen to my body and be my own advocate. I ignored my aches and pains for years, especially when I was a teenager and refused to get tested or see a doctor. When I finally did see a doctor, I was brushed off as having a "virus". I had to demand to be tested and it's a good thing I did, the tests were positive. Our body's know what we need and we really have to listen to what they're saying and advocate for proper care.
23. My favorite motto, scripture, quote that gets me through tough times is... "Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go." (Joshua 1:9).