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.

 

140702_001 copy

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.

IMG_0437

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

SUMMER SALE

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)

Do I look thinner?

19 Jun

10322668_958841114145342_7706456168068472696_nYep! That’s right! I had my appendix out a couple weeks ago!

I was having stomach pain – which I always attribute to my gastroparesis. It eased up and then got bad, then eased up again. Then, on Wednesday, it got really bad. I took something for the pain, and hoped I could sleep. I didn’t. It was a horrible night with severe pain and nausea. But the pain felt like it was right around my belly button. I figured I was having a severe gastroparesis attack.

But then, at 3:00 in the morning, I felt like I was running a fever. The pain meds hadn’t helped at all. So I got up and took my temperature. I had a fever.

A fever is not part of my normal GP issues. So I sat down in the living room, opened my computer, and tried looking up my symptoms. I figured it might an intestinal infection or a real bowel obstruction (they call my bad GP flares a pseudo obstruction) or maybe an appendix (but the pain seemed like it was in the wrong place for that). By 4 AM I knew I was going to have to get to the ER. But Bill was sleeping so peacefully, and I hate the ER so I decided to try to wait it out a bit longer.

At 6 AM, I was in such bad pain I couldn’t take it anymore. Bill stirred, and so I quietly said, “Honey, I think we’re going to need to head to the ER”. Instantly he was wide awake.

We started getting ready and debated whether I should try to see the GI doc or go straight to the ER. But I was in such pain, that I knew if I went straight to the ER they would get me on some real pain medication much quicker than if I went through the doctor channels. So I packed a bag thinking I might be looking at 4-5 days dealing with a severe shutdown of my stomach. I had a horrible time bending down, it hurt so bad. I was dizzy and sick to my stomach. Every bump we hit on the road hurt. We were just past the bumpiest part of our street, when I realized I forgot my ID. So back over the bumps, bill got my purse, and back over the bumps again. UGH!

We picked a great time to arrive, because there were only 2 other people in the ER so everything moved pretty quickly. But it wasn’t until the doctor started pressing on my stomach that I really suspected the appendix. The moment he pressed on my lower right abdomen, I knew. It really hurt! But I’m not a screamer, so I don’t think the doctor noticed.

They sent me for a CT scan and then came the waiting game. Finally, he came back and said that, to his surprise, I had a very inflamed appendix!

Now, here’s the thing that only my ME/CFS friends can probably understand. I felt a huge wave of relief!! I had something hundreds of normal people get and it can be fixed! Diagnosed and fixed within 24hrs! That is SO cool!!

I was treated so well by every staff member I came in contact with. I was able to share about ME/CFS and the current scientific understanding as well as the problems and stigmas, with several nurses, a nurse about to take his exams, and several doctors!

I discussed some of the issues of anesthesia for people with ME/CFS and for those with excessive mast cell activation with the doctor prior to surgery, and he apparently did a great job, because I did fantastic. Yeah, it hurt, but I came out of the surgery great, and I’ve healed well. We’re now 3 weeks out from my surgery and I am just about back to what I was pre-surgery.

Unfortunately, that’s not real great. It’s been a long hard winter, with very little relief from ME/CFS. I’ve had some challenging days and even had to go back and read my own words about the value of my days, and persevering on.

But as emergency procedures go? It’s was as good as it could be. And it’s fixed!! IT’S FIXED! Hahaha…. HOORAY!

 

More Plumeria! I love Hawaii!

18 Jun

'A'ala copy

My newest painting in my Etsy shop is one of the largest paintings I’ve put for sale! It’s another hawaiian plumeria and painted from a reference picture I took a few years ago.

I just love the sweet fragrant plumeria in Hawaii. I’ve titled this new painting ” ‘A’ala ” which means sweet fragrance. I painted this from a reference picture I took of a beautiful white plumeria in Hawaii.

It measures 16″x 20″ and it’s painted on 300lb Hot press paper. This is a very smooth surfaced paper, and very thick and stable. All it needs is a good mat and frame!

It’s available in my Etsy show HERE

This day was not a waste

19 Mar

Sick Day.001

Some days are harder than others. Today was a very sick day. I’ve worn my pajama sweatshirt all day. My hair is dirty and I couldn’t get a shower. I moved from my bed, to laying in the recliner. I entered a few contests and checked email. My husband made me lunch and I sat up on the couch to eat. Then, I laid down on the couch and watched some TV. I got up and made a very easy (5 minute) marinade for some chicken and stuck in the fridge. I felt so awful I went back to bed and watched some LOST. I got up and turned on the oven and put the chicken in to bake. I laid back down on the couch and wrote this blog.

I’m tempted to think this day was a total waste. But it wasn’t! This day was not a waste!

How can I say that? Every day, I know that I am loved and valued by God. And if the only thing that happens today is that I give my heart back to him in love and devotion, then my day has not been wasted.

 I will sing to the Lord as long as I live. I will praise my God to my last breath! ~Psalm 104:33

So all day long, when I was tempted to feel that this was a wasted day, I closed my eyes, and remembered how much I love God for loving me, and I mentally lifted my heart up to him in worship.

What an amazingly valuable lesson I have learned in the midst of a very difficult situation.

Orchids and Plumeria

11 Mar
8x10 Orchid Original Watercolor © Melanie Pruitt 2014

8×10 Orchid Original Watercolor © Melanie Pruitt 2014

5x7 Original Watercolor © Melanie Pruitt 2014

5×7 Original Watercolor © Melanie Pruitt 2014

To keep my self warm, I’ve been painting tropical flowers! These are my 2 most recent paintings. Both are SFA (Small Format Art) and both are painted on 300# Hot Press (a very smooth surfaced paper)

You can click on the pictures to see them in my Etsy Shop

I hope they send a little sunshine your way!

Penguins

10 Mar
5x7 Original Watercolor © Melanie Pruitt 2014

5×7 Original Watercolor © Melanie Pruitt 2014

 

What an icy snowy winter we’ve all had! In January, I painted these little penguins for an EBSQ exhbit! I was practicing some new techniques to create texture and I love how the background rocks turned out!

This little painting is available in my Etsy Shop. It can be purchased alone, or matted, or matted and framed.

Blessings

9 Mar

God blesses those who are poor and realize their need for him  ~Matthew 5

Before I became ill with M.E., I always did all the menu planning and grocery shopping for our family of 5. We were often on the run with little league, musicals and ballet, but I always had meals planned and prepared for the family. Accomplishing this on a minimal budget was challenging, but I always found a way to make it work. I even got very good at planning a 2 week menu and doing one large shopping trip every 2 weeks.

As my illness progressed, it became harder and harder to do the grocery shopping. My husband started coming with me to help me out. Then I had to start using the stores electric scooter. Eventually, I just couldn’t do it anymore. And I had to leave it all up to him.

The thing about grocery shopping is that no matter how detailed you make the list, there are decisions that have to be made in the store. And he makes different choices than I do!

He would get home from shopping, and I would help him unpack the groceries, mumbling under my breath at every choice he made that was different from what I would have chosen if I had been able to shop. 

When I allowed this to frustrate me, it was hard on our relationship. He was doing his best, and I wasn’t so much frustrated with him, as I was with the fact that I didn’t get to make the choices any more. I wasn’t accepting the new fact that I needed him and I wasn’t embracing his willingness to add another huge chore onto his already long list. My eyes and thoughts were on what I was losing, not on what I was gaining.

Sometimes it’s overwhelming to realize how reliant I am upon other people, especially my husband. This imposed dependence has quite the potential to break down even a good relationship. The harder I try to hold onto independence, the more it challenges the relationship.

The same goes for my relationship with God. Living the last 12 years with M.E. has shown me just how much I need Him in my life. The more needy I become, the more I am blessed by God’s presence and activity in my life.

And just like my relationship with my husband, in order to experience those blessings, I have to let go of control and admit my needs. It’s only then that I can see the blessings of his provision and faithfulness.

This is just one of the things I am glad to have learned in this journey with M.E.

A Special Interview and HUGS for my Online Friends

Follow

Get every new post delivered to your Inbox.