A National PR Campaign for Myalgic Encephalomyelitis (M.E.) has formed, and we mean business.

Pay attention, friends and fellow people with M.E., for the first time in a long time I think we–people affected by actual M.E.–have a chance to get something done.

But please note, we especially need help RIGHT NOW, because for the next three days until January 21, 2015, midnight E.S.T., ALL DONATIONS up to $1,000 will be DOUBLED! (see update below)

I wanted to post about this last week, but this disease is so efficient that it kept me from doing so.

Brooke gave me the link to this, and I’m so grateful that even as she lies dying from this disastrous disease, she’s still trying to make it better for the people who will remain. Despite a definitive diagnosis and an admission to hospice on the grounds of myalgic encephalomyelitis, she and her husband (and the few amazing family members helping in her care) get harassed daily because (1) the top organizations that exist for us only advocate for “ME/CFS” and (2) all of their information revolves around CFS, not anything about ME and its potential to be fatal. This has caused 90% of her family and many friends to not only genuinely believe that she’s “choosing” to die, but also that her family and doctors are “helping” her do so by not forcing her into CFS-based “treatment,” because again, the top “ME/CFS” organizations have absolutely zero accurate information about ME. We can do something to change this.

From the 501(c)(3) not-for-profit corporation May12.org, comes a new division, M.E. Advocacy.org, and here’s what they’re doing and how we can all be a part. Please read on to see how you can help people like Brooke, myself, and so many thousands of people with this disease.

The National PR Campaign for Myalgic Encephalomyelitis (M.E.) has begun.

Three-ME-Birds (1)

We have hired the public relations (PR) firm, Crowds On Demand, to manage a PR campaign on behalf of ME patients who are too disabled to protest for themselves in an effective way.

We aim to start a national dialogue and get ME and its issues on the radar of the general public, patients, doctors, researchers and our policy makers in Washington, D.C.


“We are asking for ME to be officially recognized as its own distinct disease in the US, along with a true ME definition. Note that this is quite different than simply changing the disease’s name from CFS to ME. We want ME separated from chronic fatigue syndrome (CFS).”

“ME was characterized by Dr. Melvin Ramsay in 1956 to describe a series of epidemics, first appearing at the Los Angeles County Hospital in the 1930’s.

Since 1969, ME has been listed under “Diseases of the Nervous System” in the World Health Organization International Classification of Diseases (WHO ICD), current diagnostic code, G93.3. Wouldn’t it be logical if this were used for ME?

In the US, however, after the famous outbreak of ME at Incline Village, Nevada in the 1980’s, the disease was renamed “chronic fatigue syndrome” by the Centers for Disease Control (CDC). A new ICD code was created under Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified”, currently R53.82.

This caused ME to be confusingly mixed with non-ME diseases, such as depression, in a series of overly broad definitions, culminating in the Fukuda Criteria, still in use today. This was politically motivated, apparently by the influence of disability insurers (Osler’s Web, Hillary Johnson, pp 217 – 219). This is corrupt, unscientific and medically unsound, and not in the best interests of patients.”

“The results have been devastating for ME patients. With a population much larger than the similar and better known neurological disease, multiple sclerosis, most ME patients are undiagnosed. Rates of disability are high – being housebound or bedbound for years or decades is not unusual. There are no FDA approved drugs or treatments. Patients are incorrectly told to exercise, when this is actually harmful. Patients can die 20 years younger than normal…

In 2014, federal research funding for CFS was a measly $5 million, compared to $115 million for the similar disease, multiple sclerosis. This severe underfunding has been occurring for decades.”

“The ICD has variations in each country. In the US, it’s called ICD-CM. … It also has an Exclude1 for CFS (R53.82). The same with CFS – it has an Exclude1 for ME. This means you can’t be diagnosed with both ME and CFS at the same time. ME G93.3 is listed under neurological diseases. CFS R53.82 is listed under Symptoms, Signs and abnormal clinical and laboratory findings, not elsewhere classified. So – the ICD-10-CM officially states that ME and CFS are two separate diseases, classified in two different categories, each mutually exclusive of each other.

“In the current version, ICD-9-CM, ME is not classified in the tabular listing of diseases, meaning it doesn’t “exist”. I’ve heard of only a handful of ME patients in the US able to get diagnosed with ME. Everyone else has been diagnosed with CFS.”

“Luckily for us, this has been rectified in the ICD-10-CM, which goes into effect Oct. 1 2015. G93.3 (the code for ME), will then be listed in the tabular listing of diseases making it officially “exist” [again]. The timing could not be better. We need to start using it!”

There is no ICD code for ME/CFS, CFS/ME or CFIDS – only CFS and ME. The NIH’s use of the term ME/CFS is improper. We ask that they stop using this term, and go back to using CFS as the CDC is still doing.”

“The language we use is important, and using the correct language to refer to our disease will help reinforce our campaign. … We encourage everyone in the ME community to follow suit.”

“As we only have the fees covered for the first month, we are currently fundraising for February, with a goal of $4,000 more ($10,000 total) by January 21. An anonymous donor has generously offered a $1,000 matching challenge grant, so the first $1,000 donated will be doubled. Please donate now!”

To donate directly, now, go here: https://meadvocacy.nationbuilder.com/donatepr

For a link to the original post, go here: If You Mean M.E., Just Say M.E.! – MEadvocacy.org
For an update on the campaign, go here. Mary Ann writes that already,

“A representative from the PR firm was present at the Congressional Inauguration on our behalf on January 6, 2015, looking for new Congresspersons who might become a champion for ME. We did one-person protests at the NIH and CDC in conjunction with that. We also have an upcoming 60-second radio ad, which will air on Midwestern health podcasts and on various FM/AM radio stations throughout the country.”

What do *I* want, personally? I’d like you to help donate, even if it’s just $1–what if everyone who said “I just don’t think that little amount matters,” still donated?

ETA: In just over 24hrs this post has received 400 views, but we definitely haven’t raised that much money–I repeat, even if it’s just $1, it DOES make a difference!
The results from the matching grant rush are in: We collectively raised over $2,000, which means the $1,000 matching grant will be applied for a current total of $3,015 raised since Sunday–you all are AMAZING! The organization now has enough for February, and anything after this will help pay for March. Every. Bit. Matters. And remember, our PR group guarantees results within 6 months, or there will be a 50% refund to re-allocate–it’s a win-win as far as I’m concerned.

If you can’t, then maybe share the link for us, say you know a woman with this disease who just wants some hope of research and maybe a treatment, because we’ve had nothing for almost 60 years.

The worst part is that when people who actually have M.E. are following the current, widespread “CFS” or “ME/CFS” treatment protocol with exercise, it will unequivocally cause disease progression. Exercise is used as a treatment in “CFS,” while the inability of people with M.E. to exercise is part of how we document our disability. Could it be any more different?

a rainbow at night

(I’ve proposed that we use the hashtag #NPRCME on Twitter and Facebook, but this hasn’t been agreed upon by the organization, yet. If it is, I’ll update here!)

It’s not easy, it’s just Now.

The Nutcracker

“Education is an admirable thing, but it is well to remember from time to time that nothing that is worth knowing can be taught.” (Oscar Wilde)

When I look back at all that I’ve done over the past year, it really blows my mind. And I did it all because I first made the choice to live and enjoy within the confines of my circumstances, just like I did last year. I set in my mind what I wanted, made whatever arrangements I could on my own to help them manifest, and let the Universe work out the rest based on what I needed to experience.

If I wasn’t supposed to have something yet (or at all), well it wouldn’t have been from my lack of trying.

I’m not completely certain of the point for me writing this… I know the things I lived, I don’t need further documentation. I don’t imagine they’d be all that interesting to anyone else, in the same way your baby photos are only important to you, and slide shows of your vacations need to be ambushed upon unsuspecting house guests if you plan to share them.

Even if I were to sit here and explain how none of it would have happened if I just blindly accepted the identity of “sick person” that most family members and even doctors wanted to give me (and that for too many years I gave to myself, as well), because “sick people” don’t live life, they wait until they’re not so sick to start enjoying themselves again, right? They wait until they’re better, don’t they…? (Not so much.)

No, people only hear what they want to hear, and until they’re ready to change, all of it only looks like “of course YOU did it, you [insert excuse here for why it’s easier for everyone else besides you].” Or some want to be spoonfed the exact steps in order to do only as much work as is absolutely necessary. To quote inspirational speaker, minister, and author Iyanla Vanzant, “You must be willing to do the work.”

And yet more than a few people said to me during a week’s worth of time, that they wished something in their life was as easy as I seem to have it………………………..

I couldn’t help but laugh.

Because nothing–absolutely nothing–has come easy for me. No one comes to acquire these traits that make life seem “easy,” because life actually WAS easy. No, they arise from hardship, and those currently living in the troughs are knee-deep in the circumstances that produce any qualities in me you claim to admire.

What one might perceive as my ease of living is actually my choice to experience it as such, not any representation of the actual work required. I’ve metaphorically crossed over mountains to get to this place from where I was, because I was not raised to be peaceful. (Please read that. Okay?)

The “of course it’s easy for you” thing is also troubling because it’s an unconscious confession of (fear) self-sabotage, the excuses you’re telling yourself for why you can’t have what someone else has. It’s giving yourself an “out” based on something external you’re unable to get or something internal you perceive yourself not to have, helping foster the belief that your situation is out of your control, so why bother? It’s a destructive twin of “I’ll be happy when…”

You can have a radically different life without changing a single external circumstance, because the only common denominator in your entire existence, is You.

Our lives aren’t defined by only the big decisions, goals, and occurrences. However much impact they have on the rest of our days, those major game-changers are few and far between. Society tells us from the day we step outside that your life is supposed to be about getting from point A to point B, and to pass your days filling in the rest with your to-do list of how to accomplish that. But that’s incorrect. That is NOT all life has to offer, and when you finally get to all those point B’s, you’re going to realize that. So listen to all of us “hippies” who are trying to get your attention before then:

Life is made up of all the little moments you encounter between those perceived checkpoints. It’s all the smaller things you do day in, and day out, that make up the most of your life and help determine your happiness.

And I guess that’s why it doesn’t matter too much to me anymore to explain all that I’ve accomPLISHED even with the accomPLICE of disease… Because the gift of those experiences will reside within me, always. And although reaching those goals was inexplicably amazing, it’s the process of living and thinking that helped me manifest them at all, which holds the most value in the long run. And that’s the part I really want to share with this blog.

If you want things to be easier, it doesn’t start with changing your circumstances. Because you can only manipulate your circumstances to the extent that you realize what is really yours to control. And that all starts with manipulating you.

 

a rainbow at night

The Killer in the Crowd

♪ "Who is the betrayer, who's the killer in the crowd The one who creeps in corridors and doesn't make a sound." ♫

“Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

All right. Something I never considered the IVIG would do (and luckily so, or else I might not have went forward with it!) was that it would so very obviously do the one thing I’ve avoided doing at all costs for the past two years: Wake up my immune system. Because that would re-activate the bartonella like it has every time in the past since I contracted this parasitic-bacteria.

And that’s exactly what it did.

Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog for the past four years, but this post from January 2012 might help a little. I realized a year later my symptoms were re-emerging, with my bloodwork also showing increasing signs. I did everything I could not to take anything immune-stimulating and DEFINITELY not any antibiotics (which are extremely immune-stimulating), and because of this, it remained somewhat latent. I know from past experience that activating my immune system in any way triggers it to attempt fighting infections wherever they exist, despite said immune system not having everything it needs to actually fight. To make it acutely aware of bartonella’s existence would be to also initiate my imminent decline. The first time this happened, I was bedbound within eight months; the next time, within just four months.

Well, all symptoms that occurred periodically since the bartonella relapsed are once again emerging VERY reliably every 5-6 days (usually 5, as is the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before it fades as quickly as it arrived; the worser “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Its reliability started five days after my first infusion in October, and has continued ever since.

Some part of me cannot believe this is happening again; the other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection. I’ll try to write more on that, soon.

The worst flares, the ones that scare me, happen right before my infusions. I get IVIG every four weeks (right now) and the effects only last three weeks… So the fourth week, my immune system has fallen back to its normal deficient state, which means I am at mercy of an infection with little to give it pause. I discussed this with my immunologist today and he upped my dose; we’ll see with my next infusion (which will take place from my own bed in a couple weeks) if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\

I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than the office, and wasn’t even sure if I should go. But two minutes after praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. I was hydrated, for one, but I also no longer felt like I was being mauled from the inside out. The flare completely stopped.

For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.

If I can continue getting IVIG reliably, then maybe several months from now my new-and-improved immune system (thanks to literally thousands, upon thousands, upon thousands of donors) can finally overthrow this bartonella (and the other, less-rapidly-progressive bugs), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path. I regret nothing.

a rainbow at night

There’s this friend I have…

I make sure they take their medicine on time and I’ve helped them figure out what’s actually helpful so they won’t have to take any more than necessary. I’ve helped them find interesting pill cases to take off the mental stress of staring at a dozen pill bottles always by their bed, which I know they have to reach for multiple times a day. I listen to the extensive list of doctors everyone wants them to see, and help them figure out which appointments are really important and suggest they prioritize those above the rest. I’ve called and written for them so they can get any procedure possible done from home, so they won’t have to deal with the physical exhaustion of leaving the house “just” for uncomfortable treatments, or the mental burden of being surrounded by a medical establishment that has traumatized them over the years.

I’ve helped them find clothes that were of soft fabric to help with neuropathy; helped strategize their budget to find money for important purchases that make their life easier, like an overbed desk, a smartphone to stay connected to friends that only exist outside their city, and a stereo that uses bluetooth so they can listen to anything instantly using their phone as the remote. I’ve introduced them to mindfulness and stressed how important it is to take care of their inner world, almost more so than their outer body, because they can’t always control their circumstances, their disease, or natural physical changes, but they can always decide how to think about them.

I’ve helped them make extremely difficult decisions about their treatment and supported them endlessly in whatever they had to choose, trusting that only they know what’s right for them, and that no matter what, it will be the best for them and subsequently everyone around them, including me. I’ve shared with them any and all of my collective wisdom to help make their travels on this earth a little easier, hopefully none more difficult than they must be. And I’ve done all this and more because I love them and want their life to be the best possible. I’m already so proud of them, for things sometimes I wonder if they even realize.

I’m proud of them for getting out of bed whenever they have the option. I’m proud of them for not giving up on life after it turned out so drastically different from their plans. I’m proud of them for continuing to try new things whenever they have the capacity, and for acknowledging, accepting, and loving themselves whenever they DON’T have it. I’m proud of them for taking care of their body even though that can be a full-time job in itself, and they’re disabled. I’m proud of them for continuing to do the things they love, even though they had to learn to participate in new ways; I think that’s so amazing. I’m proud of them for reaching out to others even when not many reached out to them. And I’m very proud of them for letting go of the ones who never reached out to them, because I’ve seen that it left them more energy to spend on the people who truly cherish them. I’m proud of them for not settling for anything less than authenticity.

And once the time comes–because it will–for them to move forward to the next phase of their existence? Don’t be fooled by the media or even friends and family: They’re not losing any battle against disease. They’ll simply be finished here. To paraphrase Eckhart Tolle: You don’t “have” a life, you ARE life. They are Life. I am Life. You are Life Itself, and you cannot lose something that you are. And the friend I mentioned, is myself.

a rainbow at night

My tonsil got me potentially-life-altering IVIG therapy.

And here’s how.

Intravenous immunoglobulin (or IVIG) is a blood product made from thousands of donors to produce just a single dose, and used in the treatment of immunodeficiency and immune-mediated neurological disease, amongst other serious things.

I guess the story starts several months ago, when I began contemplating seeing my immunologist again to have my immune function retested. Not that long after, I began getting spots on my tonsils which, after having some lymph node pain in my neck and ear pain, I figured was the result of an ear infection trying to push its way through; the tonsils are lymph nodes, after all.

After my ear improved with tea tree oil drops for three days, the tonsil spots proceeded to go away…and then come back worse. There I was thinking my immune system had won against something, but no! Accompanying this, my neck and face felt like they were on fire, and I had stabbing lymph node pain from my face to my right arm all day. It seemed to irritate the previous nerve damage in my face. (And mind you, I’m already on ibuprofen and percocet daily–the pain was going through them.) I wondered if I had gotten some type of stubborn virus, began to worry, and decided I needed to make an appointment because I couldn’t handle this one on my own anymore. And getting that appointment went something like this:

Mentally pair my current problem with having wanted to get my immune system checked, anyway. Decide that’s perfect, I can do two in one; have a great feeling about that. Call to make an appointment and find out my usual immunologist left, so made appointment with new woman in the office. Suddenly start to feel uneasy that I made that decision while distracted by two people in my car. Call back to inquire about which immunologist in that office likes complicated cases. Receptionist says she doesn’t know, but the one I just made an appointment with was available more (in town more often), so that might be something I could consider; I say okay and hang up. Still feel uneasy and nagging intuition that I should call back AGAIN and take the cancellation they offered for The Other doctor, even though it was two days later than the one I’d just made and I was really hurting. Try to find an explanation for this intuition (because I just like to have explanation for things, if I can); begin doing research. Find out the Other Doctor loves complicated cases, AND he has thirty years experience, AND he’s the same doctor I saw twelve years ago at the onset of the M.E. (who helped me even without realizing it by giving me a steroid to slow down the initial inflammation). Immediately called back for a third time that day to take the cancellation–finally feel at ease.

I felt ridiculous calling back so many times to change appointment dates and doctors, but. Intuition over feeling silly for a few seconds. The strange thing was that when I called to change the appointment–which I’d scheduled with the reason of having tonsil trouble and needing to recheck my immune system function–they asked me, “and you’re beginning IVIG?” I said, “…No? No one has ever offered me that!” and she said, “Hmm, that’s weird! Someone wrote down that you were starting it!” Hmmm…

I’d almost canceled my appointment before ever going to see him, because the grapefruit seed extract/olive leaf extract rinse I’d been using had–between making the appointment while in severe pain and the days before the appointment actually arrived–helped my tonsil to the point of there being no spots left. “Luckily” I didn’t. By the time I arrived, he actually said it was fine!

Long story short, my current doctor, the “Other Doctor,” who shall henceforth be referred to as My Immunologist, is wonderful. He doesn’t know fully what M.E. is, but understands that it inflames my brain and causes progressive muscle weakness. He was knowledgable that once you get certain infections there’s a possibility of them going chronic, so we didn’t have to argue over that. And for some reason, in his chart as well, was written that I was there to start IVIG. I told him the same thing, that I’d never even mentioned IVIG to anyone, and no one had ever offered it to me. (If you’re not aware, there’s a certain supply of IVIG and they don’t just give it to anyone.) So, staring at my page-long medical history and at a loss of how to help me, he offered it to me!

So, because of this tonsil and the other dozen quirky things that got me to that appointment at that time with that doctor, I have now gone through the system, gotten approved with the help of test results showing that my immune system is still.. well, my immune system, and both doesn’t have enough of things or produce adequate antibodies, and am starting my first IVIG infusion tomorrow, Monday, October 6th, at 9am at an infusion center. This will do either one of two things: Help me, or affirmatively rule out that this is never going to be one of my options so I can finally lay it to rest. But I’m obviously banking on it helping! And if I feel safe enough, they can even come do the infusions in my home!! Which, by the way? Is a method of infusion that my insurance had only begun approving three days before that appointment.

Of course, my tonsil has done what it’s been doing for literally months now and the spots have returned and even popped up on both sides of my mouth. We’ve at least ruled out strep, though. He immediately called me in an appointment to the local office to do a culture with his associate, the lady doctor, upon hearing the spots abruptly came back over the weekend and spread. Neither one of them is sure why this is suddenly happening, but she thinks those and my other lymph node pains have been the result of an overburdened lymphatic system and weakened immune system, because nothing else has changed besides my relapse back in June. Basically my body is probably just overwhelmed. I liken it to a skin infection I get on my neck only when my immune system is overwhelmed. This could lead to tonsil stones if it doesn’t clear up, but he’s hoping the IVIG will help that, too. Frankly, since the severe pain has subsided, I’m content to let it work itself out, now! (With some grapefruit seed extract rinse, to help things along.)

My favourite part about this, besides the actual IVIG, is that I get fluids before and after each all-day infusion because of my chronic dehydration. And I get to do this once a month. Which means I get fluids once a month. I haven’t said anything here, but I’ve returned to needing fluids in the ER every few months. Some friends helped me discover coconut water in June, which has helped a lot–now I just come very close but can usually “save myself”–but it’s still a daily battle. So if the IVIG goes well, I can continue getting monthly fluids as well, and dehydration will be one less thing on my balancing plate. I finally see a new endocrinologist later this month to discuss treatment for what was in 2009 borderline adrenal insufficiency, which should help that even more.

Another thing my bloodwork revealed was a high eosinophil count, which for me means the bartonella and/or mycoplasma are active–no kidding–as that was one of their first presentations. They’re not as high as they were before when things were progressing really quickly, though, so that’s comforting–maybe this IVIG can help subdue them! I’m very eager to see what will happen when I can actually make antibodies!

I’ve joined the Immunodeficiency Foundation, so if you’re on there, look out for me, or let me know your username! My thoughts about primary immunodeficiency usually take the back-burner in comparison to everything else I must balance, but when I think about it, living with it really does add a layer to my life that people with full-functioning immune systems just don’t have to worry about. I’m looking forward to being part of the support community.

 

As of this month, it’s now been two years since the big relapse (before this one) that made me stop all treatment in favor of, um, living… Now I get to try this! I’m thinking surely it will do something, for all of these factors to have led me to this point? I don’t believe in coincidence! I’ve been visited by multiple types of owls in my backyard almost every night since this whole tonsil thing started, despite maybe only hearing a wild owl three times in my entire life before this. Owls are symbolic of intuition, wisdom, the ability to see what others do not, and their presence announces a symbolic death, major life transition and upcoming change. 

Last night the Great Horned Owl visited me again.

a rainbow at night