Update

Finally getting back on here. I meant to update repeatedly over the last months, but there was kind of a lot going on, and most of all, I've been really tired. My tablet & phone have also taken over most of my Internet usage, making my laptop feel like a huge, heavy relic that takes sooooo much effort to whip out...

But here I am. Still tired. (And yes, I get the irony of just having finished a post about my dissatisfiction with the new name, SEID, and now complaining I'm tired...but I know you know that's not the point...Yes, I'm tired, but there are so many other reasons I've been miserable.)

Not sure what happened. I was feeling really good when I was doing the juicing and raw foods, but then I started getting tired. And never really stopped. It probably didn't help that I stopped my SSRI, and slowly spiralled into the grasp of depression and anxiety. After getting back on, that's mostly all better, but I'm still tired. For once, I'd be completely happy to stay home and lie around napping all day. Which is strange considering that even when I'm virtually glued to the couch during a POTS flare, I'm not sleepy, and my mind is always running.

Despite my disappointment at the new name for CFS, I was excited to read about the Rituximab trials in Norway. Unfortunately, I've already given most of my 30s up waiting for my Disability insurance, or a successsful treatment, so 2-5 more years, taking me into my 40s, is a bit much. Not to mention, I'm going to have to figure out how to survive on monthly Disability benefits that won't even pay for a 1 bedroom apartment soon...And living with strangers while sick has already gotten old.

I contemplated trying to get Rituximab in another country, but it still seems like it would be pretty expensive, and it is, after all, chemotherapy, so not something to mess with lightly. (It's usually used to treat Cancer and Autoimmune diseases like Rheumatoid Arthritis and Lupus. If I understand correctly, it wipes out these things called b-cells that are what's malfunctioning in a dysfunctional immune system such as with CFS, then your body can make new ones that work as they're supposed to.)

Thankfully, my Doc had a new treatment for me to try. Another anti-viral. It's supposed to help pretty quickly,if it's going to, but I just started it Saturday.  So we shall see how that goes. Trying not to get my hopes up too high, but still hoping. So far, I'm just feeling a bit fragile, not quite weak, not quite devoid of energy, but a bit different. Was a bit nauseous today, but that could just be acid reflux. So we shall see...

A New Name that Sounds the Same

As most of us with CFS/ME already know, the powers that be have chosen a new name for our illness. I was so excited to hear this, myself, assuming, that, naturally, the new name would be Myalgic Encephalomyelitis. So imagine my dismay upon hearing the new name: Systemic Exertion Intolerance Disease. I almost couldn't believe my eyes. The main problem with the name Chronic Fatigue Syndrome was that it implied that all that was wrong with  the patient was that they were just really tired. So why in the world would they choose a name that pretty much implies the same thing?!?! Actually, it may be worse. Because not only does the name imply that we are simply always tired, now we're tired and we can't handle it. So, for example, the misguided psychologist who told me, when I first got sick, that she hated getting up in the morning and was tired a lot too, implying that I was just needed to quit being a wimp and suck it up, no longer need waste her breath, because the name of the disease says it all. I'm tired and I can't tolerate it. I can't cope. Thanks a lot CFS renaming panel. Thanks a lot.

On the bright side, they are set to review the name and diagnostic criteria again in five years...

Seriously though...what progress have we made, when of all the things wrong with us, the medical establishment is still focusing on fatigue? Okay, so maybe technically "exertion intolerance" isn't exactly the same as fatigue, but it might as well be. They could have made the name reflect the immune system problems. Autoimmunity. Inflammation. Autonomic Dysfunction. But nope. We get to be intolerant to exertion. (Ahem. --Tired.)

Anti-bacterial Foods to Fight Infection Naturally

Great info!
Covers:

Garlic
Coconut Oil
Turmeric (perfect for my bacterial overgrowth/bacillus issues)
Horseradish
Fermented Foods
Honey (very surprising, I knew it had antibacterial properties, but not about the H2O2)
...and more

http://www.youngandraw.com/10-antibacterial-foods-to-fight-infection-naturally/

Great News for Those with Medical Debt!

Got medical debt? Your FICO credit score may go up http://money.cnn.com/2014/08/07/pf/fico-score/index.html

Dawn Rising

Well. Things have calmed down again. Glad that's out of my system. I wish I wasn't so emotional, but genetics are not in my favor. I know, I was born sensitive and emotional. I could manage it a lot better when things were a bit more stable, optimally, when I was truly happy, which was a very short period of time...I still hope as things get better I can control the urge to last out when I'm hurt and handle things far more gracefully. Another thing that frustrates me about the effects of chronic illness on my life. Being a better person has always been on my list of life philosophies since I was a teen though, so I have hopes I will recover the progress I've lost ground on the last 10 years of isolation and difficulty.

I see the light growing on the horizon as if it were a new day, slowly, but surely dawning, and I am so grateful for where I am now, and where I see myself going.

I am so grateful! I found a lovely roommate, a young woman from Europe, transferring for work to be near her long-distance boyfriend, a young aspiring filmmaker who gave off a very good vibe, and I am relieved and excited to be sharing my place with her. I know it's just an apartment, but I love it. It's the first time I've actually gotten to furnish my own home to my liking, and I've been told it's very cozy. (I wouldn't say it's an interior design masterpiece, not by far, but it's comfortable, up to date, and it's all mine!)

Now, I never thought I'd have to have a roommate at this age, but then, I've had to scrap most of my plans and pre-conceived notions of how my life should be, and it's a hell of a lot better a place than I was at a year ago. (Well, literally AND figuratively speaking, cuz I was homeless this time last year, sleeping on the couch, and this place looks and feels completely different now!)

I've put my persistent wanderlust on hold for now...Because seriously, with my health issues, it was a little delusional...PLUS, I finally realized, I live in a place many people in the world would and do envy...I'm blessed to be a 5 minute drive from the Los Angeles Beach Cities, my beloved Golden Coast, and the cliffs and amazing vistas of the Palos Verdes Peninsula, close enough for me to cruise up to without getting too tired... I made myself wake up from dreams of exotic islands with not as ideal weather and reminded myself how much there is to explore and do here, so why the heck would I want to put myself through a move or a plane ride and the stresses of travel? Yes, I think my feet are landing back on the ground. These last several months have been therapeutic, because I've caught myself lately completely forgetting my life is at all "abnormal"... I feel like a "real" person again, a regular Jane...It don't feel so much shame or beat myself up so much over what I can't do, and although if I stop to think, I know the reality is that each day IS a struggle from the time I get up, it's so normal to me now, that I hardly notice, unless it's a really, really bad day. I think I'm getting my social skills back, too, although my brain has been a bit scrambled lately, and I still find myself forgetting some of the niceties and tact that used to be second nature to me...

I've found a new lead on wellness, that I'd temporarily overlooked/half forgotten... Cleansing and Detox... Including Juicing, and discovered Colon Hydrotherapy. Great stuff. Hopefully I can stay focused on that, and continue to get grounded and incorporate more of what I want to help me...Meditation, Yoga, and my biggest, scariest, most exciting dream, writing...then when I have that down, maybe on to try dating once again, eek! That will be the biggest challenge of all, because no matter how "normal" I feel, that will have the potential to make me face my limitations in a very big way...But I have hope in my heart that the mysteries of fate have to give me a break and life will suddenly begin to come together...and move forward, and I find myself excited to see what happens next...

Stupid Things People Say to Those of Us with Chronic Illnesses...

As some of you may know, my father passed away recently. Today, I checked a filter I have set up to divert messages from certain people to a special folder, so I don't have to read them. I thought my Father's death may have bridged a chasm in my family, but this email has since dispelled that idea. Take note of the the bold italics (mine).

Dear :

Both of us had the loss of a very dear person: my brother and your dad. 

He was a great brother, very caring and very helpful, who always wanted to do
as much as he could for me. 

But also, he was a good father for you. He loved you very much and he worked
hard to provide with everything you needed. He was always thinking and talking
about you, believing you were a gifted child, very smart and bright. He thought
you will have a great future, a successful one. 

Somehow, I think, you disappointed him. However,you are still young and smart.So, in memory of your father, you can make an effort to change your life and make for yourself a more satisfying and meaningful life that you will be proud of yourselfand thinking your father would also be proud. 

May memories of your dad bring you always peace and joy.
Warm regards,


p.s. if you want me to give you encouragement or need to talk to me, call me

 No, this isn't a joke. Even the postscript. No lie!

Why have I disappointed my Father? Well, I believe a clue lays a couple messages down in that folder, in another e-mail, all about how I shouldn't feel sorry for myself.

See, apparently, that's why I don't work, had to drop out of school, I've been broke, had to move in with my Dad in a 55+ community, been homeless, and been through all kinds of fun stuff! Cuz gee whiz, I just need to get over it and try HARDER!

See, his wife has Fibromyalgia or CFS or both, and she manages to work, so I should be able to also. Nevermind that he has no idea how my symptoms compare to hers. Or that I got sick when I was only 23, and still working on balancing work and school on an immune system already weakened by a severe viral infection and long-term stress from a very dysfunctional family, and my own demands on myself not to be like them...while she already was an older woman, with an established career, business, and life. She could afford insurance and alternative therapies to help with her symptoms, arrange her work schedule around her needs. Trips out of the country to get experimental treatments. Holistic therapies, special diets. All the things I coveted or scraped for and still couldn't achieve unless I got lucky.

Nevermind that my stubborn insistence to go back to work repeatedly, probably cost me the proper function of my Autonomic Nervous System so that I now HAVE to spend an inordinate amount of time, lying down, yes, even as I type it's getting hard to breathe because I'm being stubborn and doing this sitting up...And when I do it lying down for too long, I risk upsetting the pinched nerve and bulged discs in my neck.

Do I say this so people will have pity on me? No. I can honestly say I don't. I say this because this is my reality. Telling it is a way to cope. To keep myself sane. To educate people out there who might come across their own family member or friend who suffers like this and help them understand. To let others know they're not alone in this. And every now and then, to share useful information.

Sure, I may rant a bit sometimes. But life like this is hard. That said, even if my overactive mind allowed me to sit around doing nothing, which it does not, sometimes driving me to distraction when it's malfunctioning particularly badly, and exhaustion, if I spent my energy feeling sorry for myself, I'd have been done for long ago.

It takes a lot of effort, planning, and will power to live with all the conditions I suffer from. Discipline, even (though I think I could use a bit more, but I'm working on it.) It would be so easy to just throw all the medications and supplements that keep me functioning enough to survive out the window and give up. To give in to depression, or fear of excruciating stomach pain, or lack of blood flow to my brain, and not eat. To not make the effort to prop myself up in bed when I know it's time to get up, but seem to be passing out, so that I can stay conscious long enough to wake up for real and get out of bed. There are so many other things to overcome, including a malfunctioning brain and an ever-changing myriad of symptoms. But I keep going. I keep making To-Do Lists, prioritizing them, checking them off, re-prioritizing... Trying to get better, trying to be better. Trying to find joy and satisfaction in the life that I've been given. Yes, things piss me off. But as soon as I can I grab onto the tiniest joy or littlest thing I can get pleasure from and delight in it. Sometimes I wonder that people don't think I'm bipolar, but it's part of my survival tactic...Move on from sadness or anger ASAP, but of course the downside is that when you're clinging so tightly to a small bit of happiness, any upset will have pull you off even harder.

Judgments like this, especially from people who are supposed to love me unconditionally, those we call family, have made me very defensive, which, ironically, sometimes has the effect of making me seem like I'm trying TOO hard to seem sick or validate my illness, making people doubt me even more.

Thankfully, I have at least successfully done some spiritual healing this year, and one of the things I've been able to begin shedding is the need for people to believe me and having it bother me that they don't. I don't need anything from anyone who doesn't want to give it anymore, not love, not shelter, not money, or even food.

The whole situation with my father has been, to say the least, complex. There have been mixed feelings, not just on my part. Many unanswered questions and actions we did not understand or couldn't justify. Many I had thought I had accepted but questioned upon the finality of death. But my gut and my heart tell me that he was NOT, or at least, IS NOT disappointed in me, least of all now. I believe he sees me, taking advantage of the battle I won and using it to re-create my life, to build myself a home, take care of my obligations, be good to myself and those I love, and most of all, to heal myself in as many ways as possible so that I can find a new path.

I am not my Aunt who has CFS/FM and can still work because she has a career to fall back on. I am not one of the ladies my other Aunt knows with Fibromyalgia who still work, and just stopped talking to me when I tried to explain that to her.  I am me.  I have about 10 different chronic conditions, some of which came about because I insisted on working when I should have given my body time to heal, because of my pride, my fear, and my desire to "show them" rather than put up with the humiliation of not being believed.

I am me, and I have done the very best that I could. Saying that if one person with CFS or FM can work, we all can/should is like saying that if one person with Cancer can work, all of them can/should. And for the record, I've still not given up finding something I can do, and I've been putting the wheels in motion to make that attempt since I got my first cent of Disability money, and the time is drawing near...all the cards are falling into place neatly...

So I guess maybe I should thank my uncle for his cruel, insensitive, smug, ignorant words. Because if I had any doubts that my Father felt that way towards me, especially for not making something of my life...(Seriously? I was stuck at home broke for 4 years, sometimes bedridden with bouts of tachycardia and autonomic dysfunction so bad I was terrified and wanted to die, or unable to walk for more than a few minutes at a time, or stomach infections so bad was afraid to eat, and ALWAYS so broke I couldn't afford to go anywhere but to the pharmacy and grocery stores, and doctor's appointments, much less make friends! Goodness knows I tried to find ways to make money even then!)

Well, my doubts are gone because I feel sure that now he sees all. And even if he was upset or hurt for the way I lashed out at him for not meeting my expectations and taking care of his obligations, I know he would be proud of me now and how far I've come the last year. Not that I'm doing it for him, I'm doing it for ME.

And now I can finally begin to get past the anger that's been eclipsing everything, and begin to feel the love I was hoping would show itself soon.

And now I know I wasn't making a mistake cutting certain people out of my life and refusing to expose myself to the hurt of their erroneous beliefs any longer.

See what I mean? I don't wallow for long.

May I continue to be blessed with the ability to turn dark into light. And may you too.