May 12

12 May

When I got up this morning, I knew what day it was… but I still hadn’t prepared anything. I have been so sick and unable to write or even think. But I remembered to put on my blue shirt!

Today is ME/CFS Awareness Day!


May 12 ME/CFS Awareness Day

May 12 ME/CFS Awareness Day

Interestingly, my husband googled “Awareness Days”. He found a website – at the top of the search, that was called “Disabled World” and listed all the awareness days they know of. There was a Constipation Awareness month, but ME/CFS Awareness Day was not listed. Kind of ironic since it has been around for many years, and has been in the news a lot in the last year.

ME/CFS or SEID (the name may be changed soon) has a history of being ignored. There is more money spent by the NIH on male baldness than ME/CFS. And yet there are so many of us, like me, who are disabled to a point of daily misery and are housebound and even bedbound. There are no treatments for SEID/ME/CFS – how can doctors treat something they don’t understand?

So, for my ME/CFS Awareness day project, I am joining in this email campaign to ask our government to fund research on ME/CFS/SEID. As a way of supporting me and our Awareness day, I ask that you join in the campaign and send this email too (email addresses and letter below). I’ve reworded it so that you can copy and paste. You can read more about it here and if you are a patient too, you can copy and paste the letter at this link.

Thank you! Time for me to go back and lay down.

A Special Interview and HUGS for my Online Friends




Email addresses:


Re: Equal Funding for Chronic Fatigue Syndrome (ME/CFS) Research

Dear Secretary Burwell and Dr. Collins:

I am a friend of someone who is disabled with ME/CFS, and I am writing to ask you to raise research funding for my disease to a level of $100 million annually, equal to illnesses like Multiple Sclerosis and Systemic Lupus.

I want to highlight two scientific reports commissioned by HHS that were released in the last two months by experts independent of the ME/CFS field. They say the same thing: “The committee stresses that more research is urgently needed.”

The Institute of Medicine, an arm of the widely-respected National Academy of Sciences, and National Institutes of Health’s own Pathways to Prevention Program have issued urgent calls to federal health agencies and the NIH to conduct more medical research into the causes and treatments for ME/CFS.

“Remarkably little research funding has been made available to study the cause of ME/CFS, mechanisms associated with the development and progression of the disease, or effective treatment, especially given the number of people affected.” Institute of Medicine

“Unfortunately, ME/CFS is an area where the research and medical community has frustrated its constituents, by failing to assess and treat the disease and by allowing patients to be stigmatized….Over the last 20 years, minimal progress has been made to improve the state of the science for patients with ME/CFS…. Innovative biomedical research is urgently needed to identify risk and therapeutic targets, and for translation efforts.” NIH Pathways to Prevention Report

NIH currently funds only $5 million annually for CFS research, despite 1-2.5 million Americans suffering with the disease. That is not enough funding to spur breakthrough science, and I suffer without any FDA-approved treatments. By contrast, illnesses such as Multiple Sclerosis and Systemic Lupus received more than $100 million annually in NIH research funding, and fewer patients are ill. Those diseases now boast diagnostic tests and many FDA-approved treatments because of the high quality research NIH has funded in those fields. That is what patients like me so desperately need, and I believe that is what it takes to fulfill President Obama’s 2012 commitment to elevate CFS at the NIH.

My friend has no treatments and she is very ill. She has been sick for more than 13 years and is unable to work. Please help her by funding medical research into ME/CFS equally and urgently.

Your Name

Winter Paintings

6 Dec

We had a very early snow, both here in the Pacific Northwest as well as across the US. It put me in the mood for winter paintings. I completed these colorful snowy trees last month. Both of them include falling snow with a shining full moon.

“It’s Cold Outside” is an 8″x10″ original that features an old oak tree that fills the hillside behind my house.

It's Cold Outside 2



“Frozen Moonlight” is a 6″x8″ that features a tree that I look at out my front window. It too has snow falling around a winter bare tree. This one can come matted if you like. It is how I have it displayed in my house while it waits for a new home!

Frozen Moonlight Matted 2

Both are available in my Etsy Shop or you can click on the pictures to go directly to the listing!

A Very Thankful Thanksgiving

1 Dec


10 years ago, I had been sick with M.E./CFS and FM for 3 years. Then I had an unrelated surgery a week before Thanksgiving. I was laid out on the couch while my husband took over the dinner preparation with the help of my girls. My son, only 10 at the time, came over to the couch to cheer me up. We spent a lot of time taking “selfies” and giggling and having fun.  It really helped me handle the process of letting go of making the dinner. It became a tradition and we have taken them every Thanksgiving since! (I’m sharing just a few throughout this post)


I haven’t been in charge of making the Thanksgiving meal since that year (due to health). I’m so thankful for a husband who was willing to take over.

However, this year, one of my daughters offered to host it! She is a fabulous cook, and has been in charge of making the homemade crescent rolls for years. This year, she added the turkey and fixin’s! It was the juiciest, most mouthwatering turkey you can imagine! I am so thankful she was willing to serve us by cooking, hosting and cleaning!



Last week, on Saturday afternoon, 6 days before Thanksgiving, I got a migraine. In general, when I get a migraine, I have them for 3 – 9 days. It’s not just a headache. It causes aura’s , uncontrollable sleepiness, nausea, and all kinds of neurological symptoms. On Wednesday,  I was exhausted and wondering how I would even enjoy celebrating Thanksgiving with the family. Thursday morning, I woke up with no sign of a migraine. I held my breath all day, but I haven’t had one since. I am so thankful for a migraine free Thanksgiving with the family!

In September our son moved to Maui for a year long intern position and wasn’t going to be able to come home for Thanksgiving. I knew it would happen eventually… kids grow up! But I didn’t realize how much I would miss him!2010



I packed up a box of goodies to help him feel like he had a little bit of “home” with him on Thanksgiving. I baked some cranberry bread and made chex mix. I put in a Christmas ornament (that’s been a Thanksgiving tradition in our family) and the Kenny G CD we always play during Thanksgiving dinner. I added a little package of “Russian Tea” (a hot drink we enjoy in the winter, but I thought maybe he could enjoy it cold in Maui). And then I packed LOTS of fudge in every crevice I could fit it in. I topped it off with a bag full of “thankfulness notes” the whole family wrote (another family tradition). It was a nice full heavy box. I am so thankful the box got there just when he was out of food and in time for Thanksgiving.



We agreed to connect with him on Skype. I took my computer to Ellen’s house, and we texted throughout the morning. Hope Chapel was having a family Thanksgiving dinner at the church, and Chris told me there was another meal later in the day for the young adults. (Free food is always a bonus for interns!) So I knew he would be well fed, but it was still going to be very hard for all of us to have him so far away. I am so thankful for texts and skype that keep us close, and for my new ipod that allows me to see his adventures on instagram and “snap chat” with all of my grown kids!

Chris asked, in text, if I would let him know when his other sister and her husband had arrived, so we could have some time skyping with the family. As we were waiting for them to arrive, my husband and I both got this text from Chris…“Distance is relative to the time it takes to get on a plane”. We were both confused. We figured it was a quote from a movie or a book… and we knew he must be really sad not to be with the family. We were really really sad he wasn’t there.





As we both were trying to figure out what to text back, he sent this text… “Seriously though, it’s really cold can you let me in?”

My heart jumped. The dogs barked. The front door opened… and THERE HE WAS!!! I seriously, started crying!!

As an airline employee, he had been able to get free flight home and had actually been on an airplane all night on his way to surprise us! It was the BEST surprise ever!!!

I am SO thankful our family was ALL together on Thanksgiving!



He had to head back Friday morning, but, oh what a wonderful day we had! The only hard part was that we lost one of our family members a few months ago. Hampton, our son-in-laws dear sweet golden retriever always joined us on holidays. It did feel a little empty without her big wagging tail and smiling eyes. But I’m so thankful God has helped them thru their grief and we will all be able to welcome and embrace a new golden pup into our family when the time is right.

Right after the tears

Right after the tears

I’m not sure I can remember a better Thanksgiving. So many things to be thankful for. I thank and praise my God who makes all good things for bringing so many blessings into my life… all in one day!



Now… on to Christmas! Yay! I love Christmas!

Happy Thanksgiving and Merry Christmas!

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Cyber Monday Sale

30 Nov

Cyber Monday Sale

Forever Adapting

3 Nov

Once again, I am working on adapting to my current level of functionality, which is pretty low. During my stay in the hospital this summer (when I had my appendix out), I discovered shower head style that made showering even easier.

I’ve shared before that taking a shower is challenging. It takes so much energy and usually wipes me out for the rest of the day. I have a shower bench, but there was still a lot of standing and holding my arms up above my head. This is not a good combination with POTS.

I purchased this new shower head at Lowe’s. It was fairly easy for my husband to install and didn’t require any plumbing changes.


There is a switch that can change the water flow from one to the other shower head, or to come through both. The lower shower head can be turned down fully horizontal which sits right over my head when I’m sitting on my shower stool. I barely have to rase my arms to wash and rinse my hair and I can stay sitting the whole time.  And I can step in and take a quick 2 minute shower without getting my hair wet if I want to. At the same time, my husband still has a normal shower as well. This has been a great adjustment.

I am really in a mindset, now, that I always need to be adapting. Rather than focusing on the things I’ve lost, when a door begins to close for me, I begin seeking for an alternative or how I can adapt myself or my environment to betters suit the situation. I really believe it is one of the keys to, not just surviving, but thriving in the midst of this devastating illness.

If you, too, work to adapt to your limitations, please feel free to share the best changes you’ve made so far in the comments! I’d love to hear from you!

Kreativ Blogger Award - Seven Things I Love

Bright and Cheery Kitchen Wall Decor

2 Nov

Before we get too far into winter, I want to share with you, this end of summer harvest painting. I call it “Handful Harvest”.


"Handful Harvest" original 8x10  watercolor © Melanie Pruitt 2014

“Handful Harvest” original 8×10 watercolor © Melanie Pruitt 2014


My neighbor grows a fun summer garden in the space between our driveways. One day I was harvesting a bunch of cherry tomatoes and when I looked down at the beautiful handful, I knew it would make a great painting! It’s so bright and cheery, I can really see it making great wall decor for a kitchen!




This painting was chosen by EBSQ as the Art of the Day on Oct 8! If you enjoy art, you can sign up for the Art of the Day emails. You get to see a lot of great art that way!

It’s also for sale in my ETSY shop. Do you know someone who might enjoy it as a christmas present? There’s plenty of time to get it matted and framed before Christmas!

Thanks for stopping by!

Kreativ Blogger Award - Seven Things I Love

Synergy Trial

17 Oct

Finally! The first ever double blind placebo-controlled FDA approved treatment trial for ME/CFS is in full swing! And I got to be a part of it!

This trial is a combo of nutritional supplement and a very low dose of Ritalin. I’ve been down the road of stimulants early in my illness. They did really bad things for me and really messed up my ANS. It was acknowledged that stimulants haven’t been good for ME/CFS, but the theory here was that the supplement worked in conjunction with the low dose of Ritalin to help it have a different effect.

I was a bit skeptical, due to my past experience, but at the same time, my brain function has been so low lately, that I had a hope that it would at least help that! And what a great thing to be a part of this study – even if it didn’t work for me.


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After the first appointment


This is me on the first day of the study. When you have POTS, laying down is the thing you do :-) Plus I caught some nice sunshine!

I am 99% sure I was on the real medication all summer due to some significant side effects. Though it was very difficult, I stuck with it to the end. I had headaches the first few weeks. Throughout the 3 months I had a lot of heart palpitations, tachycardia, chest pain, and difficulty sleeping.


After the last appointment

When the 3 months was up, I was anxious to get off the medication. Unfortunately, I had a horrible 5 days of withdrawal. It irritated me a bit that they had not warned me or taken this possibility into consideration in development of the study.

But I made it through and coming out on the other side, I can tell I feel much better off the medication than I felt all summer on it.

They said they’ve had some good response to this treatment, but I didn’t. Disappointing? Yes, but I’m still proud I was able to be a part of this study. Let’s hope there are many more to come and this trial will help my doctors understand my body and illness a little more. But…No more stimulants for me… ever!


Pairing up Pears

4 Oct
© Melanie Pruitt 2014

© Melanie Pruitt 2014


EBSQ is a website that was developed for self-representing artists. We can create a full portfolio, sell artwork, connect with other artists and enter monthly exhibits. But it’s not just a website for artists! It’s for everyone who loves art! For many years, I had a patron account and received the daily art emails. You can check out my artist profile HERE

One of the July exhibit’s was titled “Ripped Off”. It’s a yearly exhibit where we pair up with another EBSQ artist, and use one of their artworks as a springboard for something new that we create. I’ve never joined this exhibit before.

But this year, I finally felt like I’d found my own voice in my paintings, so I decided it was time to tackle this challenge. I contacted a friend and fellow artist name Torrie Smiley . You can follow her on FB here. She does some wonderful artwork and I especially admire her many paintings of pears.

She gave me permission to use her pears as a springboard for my own painting. And this is what I created! You can see it on EBSQ here or on Etsy here.

And be sure to visit Torrie’s pages too… she’s an awesome artist!

He lifts up my head

27 Jul

When my heart is heavy…when I’m tired of fighting to live well…when my body is riddled with weakness and pain and illness… I remember that Jesus is my hope. He is creating me into something beautiful.

The journey is hard. I sag under the pressure of it. But he lifts up my head.

“My soul cries out
My soul cries out for you

These bones cry out
These dry bones cry for you
To live and move
‘Cause only You can raise the dead
Can lift my head up

My soul cries out
My soul cries out for you

Jesus, You’re the one who saves us
Constantly creates us into something new
Jesus, surely you will finds us
Surely our Messiah will make all things new
Will make all things new”

by Gungor from the album “Beautiful Things”

Summer SALE at The Creators Palette

20 Jun


Get 20% OFF thru July 31

Use code SUMMER20 at checkout

Screen Shot 2014-06-18 at 4.30.52 PM

To help pay off the bills for my appendectomy, I’m having a summer sale in my Etsy shop! You can get 20% off any purchase just by using the code SUMMER20 at checkout. Please tweet this out, share it on Facebook, tell all your friends! Summer is often the time that many of us like to redecorate our homes, or decorate our summer cabins/cottages. I have original paintings, photography and prints for sale. Click on the picture above to visit my Etsy shop! (this is just a screen shot of the front page. Many more paintings are available)


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