A Good Day!

Hello Friends!

I had a good day. When they happen, I embrace them! Awhile back I wrote about my BOTOX treatment for chronic migraines being denied by my insurance. It was not good news – all other treatments have failed. I had my first BOTOX treatment in Las Vegas, and although they did not really rid me of the headaches, they certainly helped. I knew that – especially when the treatment ‘wore off’ and the headaches returned threefold! So, of course, when I received the denial letter, I was more than a bit frustrated.

(I’m including the commercial regarding BOTOX for migraines if you are interested in learning more about this option.)

Luckily, my neurologist persisted and submitted further documentation. It was finally approved, but I was given a very small window to get it done. Well, today was that day. Granted, the BOTOX injections are not pleasant – 5 across my forehead and 4 in the back of my neck. For some reason, I respond with a headache – but somewhat short-lived. It takes about 3 weeks to get the full effect, but at least I’m on that 3 week path. The injections are typically given every 3 months (pending insurance approval, of course).

However, as good of news that this is, it is not the only news I wish to share! When we first moved here and I was unable to get a doctor, my amazing Aunt Loonie was able to get me into a doctor in Lubbock. I saw her (the doctor) for 6 months and received Rituxan infusions. Although this isn’t the best treatment for Lupus Nephritis (lupus kidney disease), it was the direction we decided to go. My kidneys are still in a bad state; however, the infusions did my BRAIN some good!

My neurologist wanted to get recent pictures of my brain (via an MRI and MRA) so he could check on the status of my vasculitis and aneurysm. He had seen my scans from Las Vegas and agreed on the sad, sickly veins in my head – they looked old, weak, and fragile. He could also see the 3.5 mm aneurysm that was either a primary aneurysm (just life) or a secondary aneurysm (due to vasculitis). Today, before the BOTOX injections, he shared the results with me.

My veins still do not look ‘great’ – but they look better! The best news is that the aneurysm is GONE!!! The Rituxan infusions helped! I’m thrilled!! It is so exciting when something – anything – improves! It’s nice to be able to share some really good news for a change!

A quote in Volume Three of Life’s Little Instruction Book reads:

#1139. Celebrate even small victories.

So that’s what I’m doing!! Whoop!! Whoop!!

Thanks for reading…

Being “Busy”…

My life sure has been busy lately! That is a good thing as it makes me feel productive and reminds me that life with lupus goes on! Much has happened and I am proud of the accomplishments I’ve had and the life transitions currently taking place.

In November, I started working towards my second Masters degree in English and Creative Writing – online thought SNHU. Currently, I am taking a Lit Theory course and although rigorous, it has been mind stimulating and it feels good to be back “in” with the learning community! I consider myself a “life-long learner” and rather enjoy engaging my critical thinking skills. However, I am a perfectionist, which can often present me as an “over-achiever.” That is okay with me as I have never been one to settle for just “getting by.” It can be difficult, but I am a firm believer that everything we do is a reflection of who we are. Because of that, I always strive to put forth 100% into my endeavors. It has been rewarding thus far.

I have joined a Lupus community – New Life Outlook. Recently, I shared my “Lupus” story, which was published earlier this week. It can be read here: My Lupus Story, if you are interested. Additionally, I have been asked to be a contributing writer for the articles shared on their site. This is exciting because they actually pay me for my submissions! I submitted a sample article about Combating Cabin Fever that I hope will eventually be published. Each month, I will be given two topics to write about. For the month of December, I will be writing about Raynaud’s Phenomenon and Explaining Lupus to Family and Friends or in Social Situations. I have plenty of information in my repertoire of stored knowledge and experience!

This leads me to a new Life’s Little Instruction that I would like to share with you from Volume Three:

Ask yourself if what you’re doing today is getting you closer to where you want to be tomorrow.

I am happy that I can personally answer this question with a resounding YES!

I hope that wherever you are in your journey of life, you can answer ‘yes’ to this question as well!

May EVERYDAY be a BLESSING!

Much Love,

~ Brandy

It’s Typical!

I have been feeling “under the weather” for the past few days. It’s typical, I suppose. The biggest problem with having Lupus is that it is completely unpredictable! After living in the warm Nevada desert for 20 years, it is taking me some time to adjust to the Texas panhandle climate (even though I grew up here). I’ve had blue fingers (Raynaud’s) and many aches an pains – a general feeling of malaise. For the past several days, I haven’t felt like even getting out of bed – but I push through and I’m proud of being able to do so.

The Texas panhandle is truly an interesting place when it comes to climate. Its seems you can experience all four seasons in just one week’s time! My family has had some difficulty adjusting to this as well – but we stick together and make the best of it. However, I worry about the loneliness and depressive state of mind that can often come with shorter days and colder weather. Thanksgiving is this week and my husband is committed to making it as wonderful as possible, even if I am unable to help as much as I would like. I appreciate him more with each passing day.

On a positive note, I completed my first week at SNHU (online) and I am impressed with the caliber of people I have the pleasure to learn with. Originally, I wanted to take two classes per term; however, I am quite relieved that I changed my mind. I feel confident that I can keep up with one course; two would have been pushing it! Even as a full time school teacher, it seems I was able to do more. Just another reminder that being chronically ill requires me to slow down. Stress is of great concern when battling Lupus…

I found a lovely little quote in Volume One of Life’s Little Instruction Book and it has helped bring a sense of joy to my spirit!

#97: “Always have something beautiful in sight, even if it’s just a daisy in a jelly glass.”

Although it is not a daisy or even a jelly glass, as I was standing in the kitchen looking through the window a few days ago, I noticed that I do have something beautiful in sight. I took a picture and it made me smile. I guess that is the point…

I hope your day is filled with blessings, warmth, happiness, and love…

Teaching…

This morning when I opened my browser, I noticed that Google had created a “doodle” of sorts to honor Corita Kent’s 96th birthday. I suspected that Corita Kent must have something to do with education because the doodle contained a chalk board with a quote by her that read: “To understand is to stand under which is to look up to which is a good way to understand.” Well, I was correct. Corita Kent was an artist and an educator who worked in Los Angeles and Boston. She authored several books including Learning By Heart: Teachings to Free the Creative Spirit (1992).

There was a time that teachers were honored for their dedication to the minds of our youth. There was a time that teachers were able to teach the curriculum in such a way that allowed their creativity to inspire the gentle hearts of children. I was an “out of the box” kind of teacher and loved creating unique lessons that would allow students to experience the curriculum in such a way that they would truly understand. I miss it so much.

I have a professional teaching license in both Nevada and Colorado. Although I have been placed on disability, I cannot seem to let them go (and have even considered getting my license to teach in Texas). I know that the chance of me being able to return to the classroom is unlikely – and in all honesty, with the load that is placed on teachers today (Common Core) – the profession has changed dramatically. What teachers lack is time because so much emphasis is put on standardized testing; there is not much room for creativity and many teachers find that all they can do is “teach to the test”. Such a shame. I honor those who teach including all of my teacher friends that I miss with all my heart.

I read a beautiful quote in a small inspirational book that was given to me by my mom called Those Who Care Teach (Sarah M. Hupp, 1999). It read: “Teachers shoot for the moon and land their students among the stars.” Words that are so true – just ask any teacher. I’m sure most people are aware that teachers do not become teachers for the money. It is not a profession that will make you rich in terms of wealth – but it will enrich you none-the-less as well as the children that are placed in your classroom. Every student that I taught is dear to my heart. Think about how many families are touched by the caring hearts of teachers. I am so fortunate to have met some incredible families over the years and I hope that in some way, I impacted their lives.

I was looking through some photographs and came across pictures of my classroom from 2011. It was the first year that I used a “Hollywood Theme” in my room. Teaching my students with every ounce of my ability was not my only goal. I enjoyed creating an environment that was fun and welcoming and would create a community of learners that would support and inspire one another. Like many teachers, I spent a great deal of my own money on supplies, books, and other learning materials in addition to the money I put into our learning environment. I know that over the years, I have spent thousands of dollars. I don’t regret it.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I have three “teacher” quotes that I would like to share with you today from Life’s Little Instruction Book:

Volume One – #45: “Show respect for teachers”

Volume Two – #944: “Do all you can to increase the salaries of good teachers.”

Volume Three – #1500: “Write a thank-you note to your children’s teacher when you see your child learning new things.”

Teachers are far underpaid for what they do. They invest their heart, soul, and knowledge in our children. I am thankful for all of the great teachers I have had in my life. I would like to end with another quote that I hope you will appreciate:

Volume Three – #1063: “Be enthusiastic in your expressions of gratitude and appreciation.”

May your day be filled with happiness and love!

~Brandy

Time to VENT

Having Lupus is a challenge to say the least. You would think the doctors who care for people like me would have the right to determine appropriate treatments to combat the symptoms that I deal with on a daily basis.

One such symptom – due to Vasculitis in my brain – is severe migraine headaches. It seems that I am the “not so fortunate” owner of this ailment on nearly a daily basis. I have undergone a variety of treatments to no avail.

In Las Vegas, after a nerve block did not help, my neurologist suggested Botox injections in my head and neck. I did not think it helped as much as I would have liked, but it did give me some relief (along with the ice pack I frequently keep on my head). I am unable to take ibuprofen due to my damaged kidneys.

Now, the migraines are back and often reach an unbearable status. My new neurologist here in Texas conducted another MRA to take a current look at my vessels and check on the small aneurysm that is an unwelcome tenant in my head. He decided that it would be best for me to have the Botox treatments again…so that’s good, right?

Well, apparently, this type of treatment must be “pre-authorized” through the insurance company. How in the world they (the insurance companies) can choose whether or not this is a viable treatment is beyond my understanding. But alas, I received the letter stating that the request had been denied! How can this be?

Volume Two of Life’s Little Instruction Book states:

#981: “Be better prepared than you think you need to be.”

I guess it is a good thing that I have TWO ice packs so that I can alternate them as needed. I’m so frustrated and thought I just needed to SHOUT ABOUT IT! Thank you for listening…

First Snow…

We got our first snow of the season today! I’m sure everyone who lives in an area where it snows in the winter feels this way when they first see the soft, white flakes fall from the sky. But after living in Nevada for so long, I’m sure for our family, it is quite the spectacle!

The air is crisp and it reminds me of the book Loser, by Jerry Spinelli, which was one of my favorite books to read aloud. I looked forward to reading it every year and always felt sad when my yearly visit with Donald Zinkoff came to an end.

Zinkoff is quite the character, and you cannot help but to fall in love with his charm…right from the start when he wears his 3-foot tall giraffe hat to school on his very first day. He discovers that he loves school and cannot wait for all of the “2,160” total school days ahead of him. Throughout the story, you learn of his soccer days and scoring for the wrong team, the Waiting Man, the “Oh Mailman” lady, the “furnace monster”, his “best friend’s” interesting collection that he keeps in hopes of making a candle, and of course Claudia – the little girl lost in the snow.

It is Zinkoff’s transformation that takes place during his search for little Claudia that came to my mind today as I stepped outside to feel the chill of the air and gaze upon the snow that so quietly danced to the ground. So poetic. It prompted me to see if I could capture its beauty in a photograph. I call it “First Snow“…

After showing it to my husband, I explained that I was really looking for “new and interesting” ways of capturing the moments we experience in life within a unique photograph (Inspired by my Nephew, Cade, who is an AWESOME photographer!) Well, my husband, who can generally outdo me on just about everything 🙂 decided to participate in this creative endeavor. Not only did he capture the “essence” of our first snow, he also captured a snapshot that takes me back to Zinkoff and little Claudia in the snow. . Craig calls it “The Lonely Wheelbarrow” and I think it is just beautiful…

What do you think? Perhaps it is time for me to visit Donald Zinkoff once again with a hot cup of Chicken Noodle Soup (Cambell’s Classic, of course!)

With that, I have a wonderful quote for today from Volume Three of Life’s Little Instruction Book to share with you…

#1314: “Remember that life’s most treasured moments often come unannounced.”

~ May everyday be a blessing

“Catch-Up” Instructions…

I’m about 4 days behind with my posts. I’ve been a bit “under the weather” the past few days. Partly, because it is becoming quite cold here and we are expecting to have some snow by Sunday…we will see. This reminds me of a perfect quote from Life’s Little Instruction Book for this time of year:

Volume One – #31: “Never buy a house without a fireplace.”

Here is a picture of ours! Nice and toasty! Thank goodness for my husband…

I also started a new “Lupus” drug – at least for me. I have tried several now. I suspect that everyone with Lupus has been on Prednisone and Plaquenil as those are pretty standard. I have also tried CellCept (unable to tolerate), Rituxan “chemo” infusions monthly (for over 6 months) and now I am taking Imuran. I haven’t be able to consume a full meal; I become nauseated after just a few bites. *sigh*

This leads me to the second my second “catch-up” instruction, also from Volume One…

#79: “Don’t take good health for granted”

And alas, my insomnia has become insufferable – yet I’m chronically fatigued…a day in the life of “me”. I am so grateful that my sister bought me some Sleepy Time Tea! 🙂

Time to stay positive and keep moving forward! So here is some good advice from Volume Three – #1200: “Remember that you can miss a lot of good things in life by having the wrong attitude.”

I’ll end this post with one final thought from Volume Two…

#695: “Don’t waste time waiting for inspiration. Begin, and inspiration will find you.”

~ May everyday be a blessing…

Today’s Life Instructions

I’m distracted today. I probably should have signed on much earlier to write a blog post. But alas, I’m struggling to stay focused. This is not my typical “lupus fog” kind of struggle – but something much deeper. I realize that when I decided to share my thoughts with the world (or whoever was willing to read them), I needed to be careful about revealing too much. Please don’t get me wrong, when it’s about me – I’m perfectly willing to be an open book. But when someone else is involved, well that is a different story…

Being a teacher was no doubt the rewarding experience that I hoped it would be. But when it was brand new to me – 12 years ago – I didn’t have the same confidence in my ability to impact the lives of my students. At the time, I taught 4th grade. It was the only year that I taught 4th grade – I changed to 3rd grade my second year of teaching and remained there throughout the duration of my career. But there is something about that first group of students. And sometimes, it comes down to just one student.

I had a troubled student in my class that year and I was in an incredibly toxic relationship with someone that I have chosen to forget about (luckily, he was in my life for only a year). But this student remained in my thoughts for all the years that followed. Over the years, I have wondered about the well being and the whereabouts of this particular student and have even searched the Internet in hopes of finding something. Well, a couple of weeks back, I finally did.

I chose to make contact. Today, I was surprised by a letter that came in the mail. It was from that troubled student that I had so many years ago. Since receiving the letter, I have read it over and over again and I learned a lot. I have been pondering what to write back. It is because of this that I have been distracted. I would rather not elaborate at this time – so please don’t ask – like I said, when someone else is involved, well I’m sure you get it (or at least I hope you do).

So with that I have three “instructions” to share with you today – all from Volume One of Life’s Little Instruction Book…

#138: “Never deprive someone of hope; it might be all they have.”

#445: “Never underestimate the power of a kind word or deed.”

#463: “Don’t use time or words carelessly. Neither can be retrieved.”

May everyday be a blessing…

Sunday Instruction(s)…

Well, it’s Sunday.When you have a book of 1560 ‘instructions’ – well, it can be difficult to choose just one to share (not to mention how long it will take if I decide to share all of them with you), so I’m selecting more than one…

. People around the world have a number of Sunday routines. These routines may or may not include going to church – but that is okay. Yes, it is true that we often hear people reference Sunday as “The Lord’s Day”. But then again, I suppose depending on your beliefs, ANY day could actually be considered “The Lord’s Day”.

Now I realize that I will have plenty of “Sunday appropriate” quotes or ‘instructions’ to share with you as I intend to continue to blog for a long time to come. But for this particular Sunday – my first Sunday as a blogger, I wanted to share something special – something that touches my soul or tickles my heart – so with that allow me to share:

Volume One – #43: “Never give up on anybody. Miracles happen everyday.”

Volume Two – #729: “Remember that a good example is the best sermon.”

Volume Two – #847: “Pray. There is immeasurable power in it.”

And finally… (I really LOVE this one!)

Volume One – #307: “Take a nap on Sunday afternoons.”

~ Life’s Little Instruction Book

Instruction #728 – 11/8/14

It will probably not come at any surprise that I will often share quotes that involve children. Ah, children – how I miss them. Every student I had was, in many ways, like a child of my very own. I loved them. I still do. And those who are still in contact with me after all these years know that – at least I hope they do.

And then of course, there are my own children. My son, Max, is 20. My “bonus son”, Jason is about to turn 16. So today I wish to share with you another of my all time favorite instructions by Brown: from Volume Two – #728:

Hold your child’s hand every chance you get. The time will come all too soon when he or she won’t let you.

~ from Life’s Little Instruction Book
via My life in words..