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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.

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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

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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.

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

Processing…slowly

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!

I can be broken and still Worship

10 Nov

This song is based on the story of Job in the Bible. My husband showed me a video created with the song and I was so moved. This could be my song – these could be my words.

Here’s the song with lyrics. You can search “Broken Praise” and see the video of Job from “The Story” on Youtube as well.

I raise my hands and shout “Hallelujah”

 

You travel to see a doctor?

19 Oct

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When I had been sick seven and half years, I’d been given 5 different diagnosis. I’d seen more than 16 different specialists in all kinds of areas (GI, Cardio, Rheum, Internal, EMT, neurologist etc. etc.). Finally, my husband and I got on a plane, traveled across the country to a doctor who finally gave me the diagnosis of ME/CFS. All of my previous diagnosis either mimicked or were a part of ME/CFS.

However, it wasn’t until 10 years after getting sick that I finally saw an immune specialist who could not only tell me what I had, but could show me the evidence on my lab work!

10 years!

But even now, almost 12 years of being sick, no one in the world can answer why ME/CFS patients have low Natural Killer cell count and function. No on can answer why the immune system is so off kilter. No one can explain why ME/CFS patients are the only ones whose cells can function on the first day of an exercise test, but can’t function on the second day!

I recently had a friend ask me “Why do you travel to see doctors if they don’t even help you?”

It was a blunt question. A question that hurt my heart. But I realized many of us face these kind of questions from friends and family – whether blunt, or insinuated.

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When the question was asked, I had several choices. I could A) respond with emotion B) defend myself or C) address the core issues of what was prompting this question.

Choice A leads me to a lot of places that are not healthy for me. I could be sarcastic or mean back. Or I could hang my head with hurt, shame or disappointment in my friend. I could go off and have a good cry and think about all the things I’ve lost. Or I could get angry because my life has been taken away and no one understands what my life is like now.

These are all of my first reactions. But not one of these responses does me any good. They all bring me down, make me a mean and nasty person, loose me a friend and leave me in despair.  And, they certainly do not help my friend understand my illness and situation, nor does it help her grow in having compassion for me or others in my situation. I want what is best, both for me AND for my friend.

Choice B is my next reaction. I am (or I used to be when I could think well) a very logical person. Yes, I am also an artist and quite emotional, but, when needed, I can usually choose to switch to logic and rely on it instead of my emotion. So, if I’m not going to choose the emotional response, I quickly start making my list of logical reasons that this is an unfair question. I begin defending myself.

Now, at face value, this seems that it might do me good. I’m standing up for my decisions. I’m defending my choices. I’m showing her what is what and who is who! And yet, the truth is, when I walk away from that conversation, I realize I was trying to convince myself as much as I was the other person. I start rethinking all my arguments and I become very insecure in the very fact that I had to defend myself. It makes me angry. Angry is not a good place to be.

It might do my friend a bit of good, if I had valid points that she listens to. But more likely, if she had good intentions, I hurt her feelings back. Revenge? No, that’s not a healthy place for me to be either. If she was truly being critical, than she will just walk away angry too. I’ve lost a friend, and we are both in a bad place.

Choice C is the only choice that leaves me in a healthy place and also gives her a shot at a better place too. So, what are some of the possible core issues that caused this question to arise?

Well, first of all, we have made science our God. Science must know everything. If you don’t understand something, the scientists will figure it out. And if it can’t be proven by science, it must not exist. So, one reason this question might be posed is out of an incorrect belief that every illness is understood and can be treated.

Secondly, we put way to much faith in doctors. They know everything there is to know, don’t they? I mean… if it is a verified illness, your doctor might not know how to treat it, but they’ve at least heard of it haven’t they? Well, actually, NO! They don’t, and they haven’t. So how is a doctor going to listen to my symptoms and send me to the right specialist to treat me if he/she has never heard of this illness?

Most people don’t understand that there are illness out there that can take years and years and years just to get the right diagnosis. And we don’t want to think about the possibility that there could be illnesses that no one knows how to treat.

The third thing I thought might have prompted this question is that most of us do not like to face that there are illnesses that are not yet curable. I’m not saying that we don’t know this fact, just that we don’t want to face this fact. It scares us!

It’s really difficult to think about the possibility that we, or someone we love, might have to face a lifetime of suffering. We want there to be a cure. That’s why football players wear pink in October. That’s why so much money and research has been put into the AIDS epidemic. That’s why there are colored awareness ribbons in every color of the rainbow.

But this year, I have had to face the truth that there is not a cure out there for me. And if there is not a cure, then I have to learn to live the very best life I can with this illness!

From my friends perspective, she wonders why I’m not getting better. From my perspective, I have gotten better. I am better at understanding and managing my symptoms. I am better at staying positive and joyful. I am better at being patient through the hard days and making the best of the better days.

So what did I answer my friend?

I told her there aren’t any doctors who know and understand my illness in my part of the country. And I told her that the doctors I travel to see, help me manage my symptoms the best I can.

It’s as simple as that and I left it there. I hope I helped my friend. I know I helped me.

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