Friday Encouragment

Happy Friday, friend! I am beaming with joy because you have made it another week. Despite the difficult moments, you have thrived. Moving forward each moment you have claimed victory. You have demonstrated grace and courage this past week.

As you pour your cup of coffee reflect on the moments of joy this past week. Remember the victories of this week. You have made progress. Your worth is not measured by your to-do list or other people’s expectations. You are cherished just because there is breath in your lungs. Treasured, simply because of the unique person you are.

Allowing yourself to rest is indeed moving forward. Your body works hard. Rest is not wasting time. Rather it is preparing you for whatever task you do next weather that is getting some water or going out to visit a friend.

Embrace this chilly and lovely day with an upbeat attitude.  Remain firm in hope. Laugh as much as possible. Enjoy the small blessings. Let thankfulness consume your precious heart. Sending spoons and hugs.

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Dear Lupus

Dear Lupus,

You came into my life abruptly and completely took over. You have stolen a lot from me. You have put me through countless hours of doctor visits, medical testing, and unbearable pain. You dictate my life.

Because of you…

I cannot trust my body

I lose hair

I wake up in the morning with rashes and fresh bruises

I need to rest too much

I had to give up dance

I can no longer enjoy time outdoors

I need to take pills everyday

I cannot hang out with friends

Because of you…

I struggle to write

I have trouble walking on my own too often

I have lost friends

I missed my prom

And other ‘important’ high school events

There are days…

I cannot eat

I drag myself through the day

lifting my tooth-brush is tiring

I cannot stop crying because of you

Though you have caused set backs and heart breaks, I cannot neglect to recognize the positives. You have taught me a number of things. You have helped shape me into the person I am today. I can fake a smile and tell jokes despite my pain. I am more grateful and find tremendous joy in the simple things. I cherish every moment with those I love. I have met inspiriting people.

You will win many battles BUT I am not going down without a fight and ultimately I will win. We will defeat you Lupus.

Sincerely Your Grateful Victim,

Victoria

The Past 48 Hours

The past 48 hours have been drenched with blessings as well as apprehension. Yesterday my friend came over, which is a treat. I have been so ill that I hardly see any of my friends or go out with them. Being able to have tea and talk was marvelous. Those couple of hours are something I am immensely grateful for. I cherish the moments I spend with my family and friends.

I received a phone call, moments before my friend left, from the infusion center. The nurse informed me that my infusion was being cancelled because someone neglected to complete paperwork for the insurance company. In addition the nurse told me they had no idea when I could receive my infusion. My insurance company only approves me for my infusion for six months at a time, then it needs to be re-approved. I questioned the doctor as well as two nurses in the infusion room regarding the paper work and was assured that everything was in order, there was nothing I needed to do. It is vital for me to get my infusion on time. The day before and day of my infusion are extremely difficult. I know getting my infusion late- even by a day would throw off my body.

I called my insurance company, even though I was certain there was nothing they could do. Thankfully I was wrong. The person I spoke to was compassionate and was able to speed things up. Even though we did not know this morning if I would be able to receive my infusion, we headed down to the doctors. I made several phone calls on the way down. As I was speaking to the third person at my insurance, the approval went through.

They began my infusion an hour late. Time during the infusion crawled by as my pain intensified. In addition to my Lupus pain I was having terrible abdominal pain from kidney stones.

My doctor moved. Therefore I am now a patient of one of her former co-workers. I dreaded seeing a new doctor. I have encountered many  quacks, uneducated, and disrespectful doctors. My health is very complex it is annoying and sometimes difficult to get a new doctor up to date with everything happening.

To my delight this new doctor had reviewed my records and spoke to my previous doctor. She was also educated about my main illness, eager to assist me, and kind. After much discussion she prescribed Methotrexate.

I feel extremely blessed how the past few hours have unfolded. I never imagined this would happen. I am over joyed and very thankful to begin a new chapter in my treatment plan.

Sending you lots of prayers, spoons, and hugs ❤

*Methotrexate blog post coming soon! Be sure to subscribe this way you don’t miss it.

Fabulous Friday #4

I figured it would be nice to share my Christmas Eve outfit. Hopefully this gives you some spoonie fashion inspiration.

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I hope you all had a wonderful, memorable, and pain free Christmas. I really wanted to post something for Christmas day however I did not have enough spoons. I hope you continue to enjoy this weekend. Sending spoons, prayers, and hugs ❤

Fabulous Friday #3

Hair Loss Part Two

Tips for coping with hair loss & other hair care tips: 

1. I found it helpful to acknowledge the fact that I was upset about losing my hair. Letting emotions build up inside is never a good thing. Cry it out. Get angry. It will help you move forward.

2. Thick head bands are wonderful to help camouflage thinning in the font sections of your hair.

3. Personally I changed my haircut style. Before I lost hair I had long layers and a simple face frame. Now my hair is slightly shorter with more layers and bangs. Changing my hair style did give me more confidence.

4. When my hair loss was extreme I began looking at wigs and hair extensions. I felt better knowing I had options.

5. I use Thickening Hair Lifter by Not  Your Mother’s some times when I go out.

6. Dry shampoo is a sick girls best friend! If you cannot wash you hair or need a boost of volume it does wonders. I use Suave Professional dry shampoo.

7. Don’t kill your hair! If your hair is thinning or falling out do not use hot tools (blow dryer, straighter, or curling iron) everyday. It will do more damage. If you must use hot tools limit how often you use them. I would recommend no more then three times a week. Use heat protection before using any hot tool. Protecting your hair is important. I use the Suave heat protection.

8. I use a hair mask every other week. (This is especially good if you use hot tools) The Renewing Argan Oil of Morocco is amazing. One jar typically last me a year and a half. There are tons of DIY hair masks as well.

9. Find a cute new up do that works with your new hair.

10. Do not wash your hair everyday. It can damage it.

My brain fog is kicking in so that’s all my tips for now. Hopefully I will have more for you in the future. Please share your hair loss tips and how it has effected you in the comments!

Sending spoons, hugs, & prayers ❤

Fabulous Friday #2

Hair Loss

I loss my hair for over a year from Lupus. Every time I touched, washed, or brushed it, clumps of hair would fall. Of course being a teenage girl this bother me. I would cry whenever I had to do my hair. I went through a stage of wearing chunky head bands this way the thinning and small bald patches wouldn’t be noticeable. I began having small sores on my scalp. As the hair loss persisted I began looking around at wigs and extensions, all the while a few questions repeated like a broken record in my head. Should I cut my hair very short and inverts in extensions? Should I shave it, get a wig, and pray it grows back? Growing up I was attached to my long pin straight hair. My thick fell right to the bottom of my back. For the longest time I’d cry when I got it cut. Yes I out grew that, but my hair was a part of me.

I feel in general young girls value their hair, it is a big part of how we look and how we picture who we are. The whole world shakes with a chronic illness and sometimes losing hair is the straw that breaks the camels back.

I decided to wait to change my hair for as long as I could hold out being that my treatment plan was still in the planning stages. I am happy I waited. A few months after being on Benlysta my hair stopped falling out. It is not what it use to be there are spots where the thinning is bad and it is thin. My thin hair does bother me at times still, but overall I am okay with it. I have learned to work with it and accept it.

If you are going through hair loss you are not alone. It is perfectly okay to cry or to be mad. Even if it is thinning you are absolutely beautiful inside and out! Give yourself time to adjust to your new normal. Things have changed due to your illness, but you are still the same amazing girl with a beautiful smile. “You only need to look to your own reflection for inspiration because you are beautiful.”

Check back for tips on how to cope with hair loss!

Fabulous Friday #1

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I’m always cold, even in the summer. Winter is approaching quickly were I live and it gets below freezing at times. I always wear lots of layers! This is one of my favorite cardigans. It’s a good to piece for me. It’s huge which allows plenty of layers and is extra comfortable for flare days.