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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

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

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!


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”

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!


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.


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


25 Feb

I know you haven’t heard from me in several weeks. Mostly, that’s because I am processing some thoughts and feelings about my illness. And I process very slowly these days.

This picture of an old computer made me laugh. It brings back childhood memories and it’s a great representations of how my brain feels right now.

I’ll share that story soon, and share about our 30th anniversary celebration as well as some of the things I’ve processing as well. Stay tuned… and be patient… while. I. process.

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Keeping my eyes above the waves

28 Jan

As I struggle with some of the deepest crashes I ever have, this is my prayer!

“Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me”

Where do you Function?

27 Nov

This functionality test was developed by Dr. David Bell. He is the first doctor to confirm for me that I had M.E.

I’m curious – what is your normal function? And if you are not an M.E. patient, think about the last virus you caught (whether it was a bad cold or the flu) and tell me your “normal” function percent and  your “sickest day” function percent. How long did the “sickest day(s)” last? How long did it take you to get back up to your pre-sick function?

BELL Scale:

100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 – 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

For me, my normal hovers between the 20 and 30 percent.

I am not bed ridden, but my house quite small. It’s 20 steps from my bed to the bathroom. It’s 15 steps from the bathroom to my recliner. First thing in the morning, I go from bed, to bathroom to recliner and my husband brings me tea. I sit in the recliner all morning, getting up once to go back to the bathroom and make fresh tea.

It’s 15 steps from my recliner or couch to get to the kitchen. I spend my early afternoon prepping some dinner with many breaks in between to rest on the couch. Sometimes I can go into my spare bedroom to paint (10 steps from the couch). The hard part about painting is sitting upright… and the concentration. Most days, I can make a simple dinner for hubby and me. But he usually has to clean the kitchen. And some days, I just can’t and when he gets home from work, he has to make us dinner.

I usually get to leave the house once a week, though there have been periods of longer than 2 weeks when I haven’t left the house once. I always pay a price with sicker days after an outing. I am never without symptoms – even at rest. But I would not say they are always severe.

I am able to be on my computer for 2-3 hours a day with rest breaks, but I am not sitting upright. I am on the couch or in the recliner. And some days, I can’t concentrate enough to read more than a paragraph and I can’t write. Other days, I can write and read better.

So, I think hovering between 20-30% is a good estimation of my “normal”.

I’m looking forward to your responses. I hope many of you will answer the questions above, both my friends with M.E. and my friends without!


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