Tuesday, August 12, 2014

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/

Friday, August 8, 2014

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

Saturday, July 12, 2014

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...

Wednesday, July 2, 2014

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.




Friday, May 23, 2014

POTS Chronicles

Oh my. This is starting to really get boring. I think it's been about 6 weeks, this POTS flare-up that's plaguing me.  Post exertional malaise is in full effect. I found a girl to help me out around the house, help me get the place ready for a roommate, and even though I'm mostly just overseeing her, I'm wiped out the next day, and the day after I've only managed through will power and pain pills. My heart is palpitating as I type, both sides of my neck are uncomfortable with that feeling like someone's got a finger on my artery, and half the time I'm afraid to eat... Especially breakfast, because my heart starts pounding as soon as I get up, and takes 30+ minutes to settle down, so I'm afraid food will start it back up and tie me to the couch even harder, or my stomach will spazz out, literally, it seems to go into a spasm after eating 1 out of 3 times lately. I feel weaker and weaker as time goes on, probably from spending so much time on the couch, trying not to aggravate things. Fortunately I still have one of my recliners, and the last couple of days I've discovered why I was so fond of it in the past. Maybe using it instead will help slow down the weakness. At any rate, it's more comfortable, with it's big comfy arms, and it's supposed to slow down atrophy of the leg muscles or something, so they're recommended when you have POTS versus a couch. I think it engages your core a bit, too. Right now I had to switch to the couch because my laptop needed to be plugged in, and even though I've got my legs curled up and am leaning sideways so I'm not fully upright, my head is hurting a bit, it's like I can feel the blood vessels stretching across my scalp, trying to grab onto as much blood as possible or something, grr.

I'm toying with the idea of starting on my recumbent bike again, maybe super slow, 5 minutes. I wonder if that could be what triggered this flare up? I was up to 30 minutes, it was awesome. I'm not sure that was it though. I've had a half-formed theory for awhile now, because I've noticed that I seem to get worse, sicker and weaker, when I'm not stressed out. Whenever I can really start to relax, it seems like I get worse, but when I'm stressed, even though you'd think that that would aggravate things, it's not as bad... It will be hard, and I"ll swear I'm about to break down it's so hard, but I don't. (Or at least I've never gotten that far, although I think I was close last year before things started to go right.)
So anyhow, I think maybe adrenaline has something to do with it. Like my heart and Autonomic Nervous System freak out when I don't have enough and my system starts collapsing. I suppose I should do some research on that, but it's so hard to concentrate, and I'm so tired of researching... It's just so discouraging, because I want to get on with my life so much, and I'm stuck here, and I know I'm so lucky to have help now, at least I don't have to worry what will become of me if I get worse, but I've also realized, I don't WANT someone doing EVERYTHING for me... And I so wanted to start having more of a social life. I got fed up a couple of weeks ago and went out with a friend for a bite and drinks, two things I'm normally afraid to do when things are acting up, and sure enough, it ended disastrously with my almost passing out while sitting down  and then vomiting explosively all over the bathroom. I also had to make up some excuse not to go out for lunch with my friend on his birthday, well, I didn't HAVE to make up an excuse, but I guess at the time it seemed preferable to be evasive than pathetic... Ah, so exhausting. Well, I've emailed a POTS specialist for a phone consult and am waiting to hear back. I wish she'd order some testing

Friday, May 9, 2014

Musings on a Manifesto

Today as I sat waiting for my new allergist to finish discussing IT solutions with an employee (or perhaps a salesperson or contractor?) and order the tests he'd told me he was going to, a headline on my phone's News widget caught my eye: ME/CFS Manifesto . 

Whhaaat? I thought. Intrigued, I tapped on the ticker and went scrolling through the actual app for it. (Fortunately, I have it customized, so I have a whole little section that imports any news with the key word CFS for me.) I found it, was even more intrigued to see it was from the Prohealth.com website (which I consider to be a premier source on all things CFS/ME & FM) so I tapped on it, wondering what this could be about, what the angle was, what in the world exactly was a CFS Manifesto WAS.

I haven't done much digging, so I can't say I'm familiar with it's author, a Mr. Llewellyn King, but all it took was reading this small paragraph to know he knows CFS/ME:

I want my friends and loves, who are in the grip of a relentless affliction, whose days are torn from the calendar of hell, to be cured in my lifetime -- and I am 74. I want to be able to hold them as whole happy people; the people they were before they were struck down by an enemy they did not provoke, a monster they do not deserve, an unseen captor, a malicious jailer that takes daily life and makes it into a tool of torture and punishment.

Lately, those ideas have been floating through my mind, spinning around, I've been examining them from different shapes and angles as they spin like a 3-D hologram, every which way, as I wonder, if I will ever have a chance at happiness again, especially if I really have forever said goodbye to the person I was. Oh, to be honest, I know that I have said goodbye forever to bits of myself and my life as I knew it... My 20s are gone, but at least I had some of them, my 30s are the big shock, I completely feel like I missed out on them, and now suddenly, I'm at that point where time seems to be running out...Just this evening I overheard a TV doctor telling this 35 year old woman that it was too late to freeze her eggs, that she was at the time when pregnancies started to automatically be called "high risk" and she should just do her best to get pregnant ASAP if she wanted children. Ha! Imagine! I thought to myself, well, maybe since most people think I'm about 25 I'm exempt? Ha. Right.

There's been the whole trying to find help thing, too. I've more or less accepted it and stopped feeling quite so guilty and awkward. Even having more help than I've ever had since I got sick (though not as steady or as much as I need) I can see now that try as I might, I can't keep up. Just trying to find help takes excruciating willpower! (It's not like I can just call up an agency with a budget of $10/hour!) Especially when I'm laid up as I have been the last 3 weeks or so with my blood pressure so low it makes me feel like an invisible hand is choking my jugular, and my heart dancing around like a spastic butterfly, and otherwise stifled by anxiety and an unusual, motivation-sucking form of depression...

I'm looking for a roommate, and it sucks too, because I know when I find one, I will be faced with more evidence of my limitations, as I am forced to watch as they lead a normal life, perhaps, ask me to join, and I can't fake it or keep up for long. I hope that they won't judge me unfairly, assume that they probably will, and that it won't be such a big deal because it's almost to be expected, and for once, I won't be the one who has to leave my home because of it.

Now, even as bad as things have been, and how much I fear a future where I will be left with nothing because of my illness, again, I don't think I'd go as far as to say that my daily life is a tool of torture and punishment...but I know that in the past there have been times where I have felt that was true, days when I have lay in bed, sweating, heart racing, body tingling, feeling like an elephant was sitting on my chest, wondering if I was going to make it through this, and that for many people who suffer from these illnesses, it IS some form of torturous hell EVERY. DAY.

That said, reading this man's manifesto gave me hope. I don't know enough about lobbying and fundraising and all that, but if what he says is true, I hope we can all pull together and do what we can to facilitate it. For a second, I contemplated volunteering to go to Washington and do it myself, and then I remembered, again, that I'm not the person I once was...sadly, but still...delusions of grandeur (and health) aside, if we could do this, and it worked, that would be amazing. Winning my SSDI was a reprieve...but I've always known it was only that. Even with money, I am struggling so much, nearly every day, I have to try SO hard. I know not everyone who has these illnesses is as alone with it as I am, but I know there are many, and alone or not, it is a war that should be recognized, aided, and abetted. If you agree, spread the word. Read, then share this article: A CFS Manifesto

Think of things you can do to help. Comment. Message me. Organize. Kickstart. There are so many of us. If there's anything I've learned through this illness, it's that when no one will help you, it's up to you, and you have to at least try. So let's do this.