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.

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

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.

Autonomic Chaos

Okay, so maybe I'm exaggerating a  little, but then, I was sweaty & hot 10 minutes ago, now my feet are icy, even under the blankets! Having the worst POTS flare in years; tons of almost fainting, fluctuating heart rate, higher than in ages, low bp, even chest pain, and my personal favorite, that feeling that someone is choking you around the jugular.
Eating makes it act up, not to mention my stomach itself keeps spazzing out. I either feel like I just ate a rock, find myself in excruciating pain, have to run to the bathroom, or if I'm lucky, just feel queasy.

Getting tired of not getting things done. I need to find someone to help me, AND, I guess, a roommate.

Got really weak in the arms & out of breath (for awhile) just adjusting my pillow, which seemed ridiculous & has been happening a lot, anytime I raise my hands above my head, they get heavy and weak, and was comforted to find a post on Prohealth about plenty of ladies with FM/CFIDS having the same issue, struggling as much as I do, to do stupid things, like hanging clothes, putting their hair in a pony tail, or showering. It really helped me feel a little less like a loser, being reminded that it's really NOT just me, that all of us with these illnesses struggle with the same thing. But sad, too, that things are that bad and I'm on my own. But just for a second, because that's nothing new.

The roommate thing fills me with anxiety, considering the luck I've had, and I wonder if I ever will get to just truly rest....

Oh well. Maybe if I go get a saline IV tomorrow, it'll help. I wonder what caused this flare? Change in hormones? 30 mins on the treadmill twice this week? Some chronic infection coming out of hiding and taxing my poor body? Who knows. I should probably go get more testing done, but I think I'd have to go out of state.

Part of me just wants to run away, somewhere far, but l've made my home so cozy for myself, I hate to leave now...

Ugh, I'm hungry, but afraid to eat! Hope you all are hanging in there!

Invisible Illness, Apocalyptic Laser Surgery, and Gratitude

I am hoping you all enjoyed the article I posted yesterday. I thought it was a very well-put explanation our experience with an invisible chronic illness. It reminded me of a really annoying post I read recently where this lady was complaining about how we are a nation of handouts, specifically talking about a "friend" who was on Disability due to back problems and who "seemed just fine" and his daughter who, like me, was appealing her disability decision for the zillionth time, and how she had it so much worse than them and didn't get all the benefits they did because she wasn't poor enough. My, my. I just thought it was interesting how she just decided they weren't that sick or disabled just because they seemed alright to her! (Oh, and yes, there's so much more wrong with all that, but I won't go there.)

Speaking of appearances, I'm stuck wearing glasses for two weeks until I have my Laser Eye Surgery. (Something about allowing your eyeball to return to it's natural shape so the correction will be as precise as possible.) Ah, glasses. I've hated them since I got them at age 10! But these, these are really something. Big old cheap clunky Buddy-Holly Plus black frames that I had to order online a few months ago, before my Disability came through, when I didn't have enough money to buy contacts (old glasses were broken) and actually went around blind for about 10 days! I'm not even talking about the cute trendy nerd-chic black rectangular shaped ones, these are huge. (The downside of buying glasses on the Internet, they looked way smaller on there, but they were cheap, and I needed to see!) To make matters worse, some people look fine in glasses. Me, I'm not one of those people. Anyhow, the effect is amazing. I just got back from doing a little shopping at my local TJ's, and ouch, it's amazing how such a little thing can make you suddenly invisible to the opposite sex. It's like some imperceptible sensor got turned off, and guys no longer perceive my presence. Sheesh. (At least last time I experienced that it was at work, so my clients suddenly thought I was older and smarter and trustworthy and became more willing to trust me with their money; not a bad tradeoff!lol)  Hopefully soon I will never have to experience the awkwardness I feel in glasses again, not to mention the fabulousness of being able to see in the middle of the night, not groping around for my glasses first thing in the morning, interrupting a delicious sleepiness to remove my contacts, and of course, not worrying about running out of contacts to loot if I survive the (fill in the blank) apocalypse, lol.

Although I have had to admit to myself recently, with all my health issues, it's not like my chances of survival are very good anymore anyways, ha!

Man, I miss my old tough self! How I struggle with that still! Just today I was contemplating running a marathon if I ever got better, and then I realized, umm, seriously girl? Even though you were a long distance runner in Track, don't forget you had to quit Cross Country cuz your knees couldn't take the impact, how smart would it be to run that long on pavement? DUH! Ok, so maybe part of it is just the natural process of aging. But not all. I still struggle A LOT with what I "should" be able to do and what I actually can. It just seems ridiculous to me still, what little I can manage.  (And then, alternately, I feel ridiculous for not doing enough!) I put myself into an excruciating flare a couple of days ago from trying to put together my bed's rails to get it off the floor and sleep like a grownup again...they didn't seem that heavy, I had no trouble carrying them, but I guess between moving them around and holding them up while I first tried to put them together in a space too small got me, because I was stiff and in pain the next day, had to take pain meds, and then took it the pain to another level when I forced myself to do just a little more. (The cleaning lady was coming, and since I can do so little when I'm facing reality and not hurting myself, well, I find myself having to tidy up so she can do her job! Ugh. (Oh the joy when she left and my home was all shiny and clean! That totally helped me deal with the pain, along with some Lyrica, an anti-inflammatory, muscle relaxer, and Epsom Salt bath!)

But yes, still trying to get someone to come help me out regularly. This week has been really frustrating, because I seem to be dealing with a sort of chemical depression, I think from getting off my birth control (which was actually meant to medicate my Endometriosis and stop all the extra grief with the POTS during my cycle, but seemed to also be making me quite angry, and not really controlling my cycle after all). When I say "chemical depression" what I mean is not that I'm blue or hurting emotionally, but that I just have no motivation. It's like all the symptoms of Depression, but not the actual, my life sucks, I wish I were dead stuff. All I want to do is sleep, watch TV, not eat, or eat junk food, and not leave the house, and I was out of my wonderful TJ's salads, which had helped me lose 10 lbs, and w/o which, I have rapidly been gaining it back, I fear.

 It would have been very helpful to have someone to tidy up for the cleaning lady (or to have kept it tidy) make me eat a good breakfast, and run to the store for me, because it takes a humongous effort for me to do anything but lie there. (And this was before and after my flare, so...it's not pain-related.) But it hasn't worked out, so today I finally made it out myself. There were things that needed to be mailed, and I realized if I do gain that 10 lbs back, then I WOULD be emotionally depressed, not to mention, sabotaging my health, so, there was no way out of it... But now that I'm all stocked up, I'm going to go get my nifty tablet and beam me up some episodes of The Mentalist onto my (sometimes)SmartTV. And realize what a lucky girl I am to be getting to rest in my cute (I  think) new living room on my comfy sectional. Even if just for this evening, I am a very lucky girl.

Six Common Misconceptions A bout the Chronically Ill

Psychology Today

Six Common Misconceptions about the Chronically Ill
By Toni Bernhard, J.D. on December 5, 2013 - 9:59am
More often than not, chronic illness and chronic pain go hand-in-hand, so when I use the term “chronically ill,” I’m including people who are in chronic pain. My hope is that it won’t be long until these common misconceptions become uncommon ones, as people become educated about what life is like for those who suffer from chronic illness (130 million in the U.S. alone).

Misconception #1: If people look fine, they must feel fine.

Whether healthy or sick, it’s good for most people’s morale to try and look nice when they go out. I go out so seldom that I make an effort to look my best when I do. Sometimes I feel like a young child again, playing dress-up. That said, I always hope that if I see people I know, they’ll remember that looks can be deceiving.

I’ve had people say to me, “You look great.” I know they’re trying to be nice, so I make an effort to respond graciously (with something other than, “Well I don’t feel great,” spoken in an irritated tone of voice). But the truth is...there I am, “looking great,” while my body is pulsating with flu-like symptoms, my muscles are aching, and my heart is pounding so hard that sometimes it feels as if it must be visible to others on the outside of my body!

When people see someone whom they know is struggling with his or her health, I hope they’ll remember that they have days when they leave the house looking great but feeling terrible, perhaps from a bad night’s sleep or from lingering symptoms of an acute illness. If they understood that this is how most chronically ill people feel all the time, this common misconception would be well on its way to becoming an uncommon one.

Misconception #2: If people’s illness or pain were truly physically based, their mental state wouldn’t affect their symptoms.

If you’re not sick or in pain, I invite you to try this simple two-part exercise, so you can test this misconception out for yourself. Part One. The next time you feel under stress—maybe you’re angry at someone or worried about something—stop; close your eyes; and pay attention to how your body feels. Can you feel that your muscles have tightened? In addition, your heart may be beating faster and your whole body may be pulsating. You may even have broken out in a sweat. These are just some of the ways that mental stress manifests in the body of a healthy person.

Part Two. Keeping that stressful mental state in the forefront of your awareness, now imagine that you suffer from chronic pain and/or illness. What would happen? Your body would respond to the mental stress the same way it did for you as a healthy person. But now, that response would be in addition to your chronic, everyday symptoms. And if those symptoms happen to overlap with the physical symptoms that accompany mental stress—tightened muscles, racing heart, pulsating body and maybe even sweating—you can see how a person’s mental state can easily exacerbate the physical symptoms of chronic illness.

This is why keeping mental stress to a minimum is so important for the chronically ill. It’s important, but often impossible. Why? Because we live in the same stressful world that healthy people live in.

Misconception #3. Preparing for an event by engaging in “radical rest” will assure that when the occasion arrives, the chronically ill will be in better shape than had they not rested.

I can “radically rest” for several days in a row before a commitment (I’ve had some events for my new book that I’ve been doing this for) and yet, on the day of the event, feel terribly sick. Resting may increase the odds that I’ll be less sick than usual on the day of the event, but it’s no guarantee.

When my granddaughter, Cam, turned six in September, I asked my husband take me to her birthday party for a short time since it’s only an hour’s drive away. It would have been a treat to watch her interacting with her friends (something I rarely get to see) and to meet their parents. I rested for four days before the event. But that morning, I called my son in tears to tell him that I was too sick to attend.

This misconception can lead to serious misunderstandings. For example, a week later, I was able to attend an event for my book. This could make it appear that I was choosing the book event over my granddaughter’s birthday party, but I was not (and thankfully my son understood this).

The truth is that the same amount of resting before each of the two events simply did not yield the same results. That’s the unpredictability of living day-to-day with chronic pain and illness. Not only can it be a source of disappointment and sadness, but if we don’t treat ourselves kindly and with compassion, it can lead to self-recrimination and be a source of terrible guilt.

Misconception #4: If chronically ill people are enjoying themselves, they must feel okay.

When an important occasion arises, people who are chronically ill have learned to put up with the symptoms of illness, including terrible pain, so they can try to enjoy what they’re doing, especially the enriching experience of being in the company of others. Please don’t assume that a person who is laughing is a person who is pain-free, ache-free, or otherwise feeling good physically.

Misconception #5: Stress reduction techniques, such as mindfulness meditation, are a cure for chronic pain and illness.

Stress reduction techniques can be effective tools to help with symptom relief and to help cope with the mental stress of ongoing pain and illness. However, unless a person suffers from a distinct disorder called somatization (in which mental or emotional problems manifest as physical symptoms), stress reduction techniques are not a cure.

Misconception #6: Being home all day is a dream lifestyle.

This misconception arises because, when healthy people entertain this thought, they’re not contemplating being home all day feeling sick and in pain! Put another way, would they say: “I wish I could be home all day with pain that no medicine can relieve”; or “I wish I could be home all day with flu-like symptoms that keep me from being able to read a book”? I doubt it.

***

My heartfelt wish is that people will become educated about what life is like for the chronically ill so that, some day soon, we can say these are six uncommon misconceptions.

You might also like "Confessions of a Sick Person."

© 2013 Toni Bernhard www.tonibernhard.com

Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.

I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.

Using the envelope icon, you can email this piece to others. You can also subscribe to my blog (see the choices below my picture). I’m active on Facebook, Pinterest, and (to a lesser extent) Twitter.

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Concise Article on Treatment of POTS

I had never heard of the cold water thing, totally trying that tomorrow, since I can't do salt or Mestinon right now, and was already having a bad flare. (I think cuz I stopped taking my Adrenal supplement last week. Can't remember almost blacking out so many times in one day for ages!) But yes, this is a good read.

http://m.ccjm.org/content/77/5/298.full

A Phoenix Rising

Well,  it's been awhile, I know.  Things have just been, well, hectic. Really, really, hectic.

As good an imagination I have, and as many times as I imagined it, well, winning my benefits hasn't solved everything or made everything painless or simple. Simpler , yes , thank goodness, because I don't think I could have taken much more, mentally or physically if things had continued along the lines that they were going much longer, but I've been tired, of course, still sick, and very overwhelmed! It's not easy catching up on several years of wants, needs, and obligations. As much as I've had to learn to use my limited energy and brainpower as wisely and efficiently as possible the last several years, by the grace of lists, prioritizing, and even, technology at my disposal, the last few months have been rough! But better by far, than any in many, many, years. For that, I am so grateful.

Slowly, I have started to feel like I'm becoming whole again, a "real" person again. My identity re-forming, you could say, because I think, it's hard to have one when all that matters is surviving. Between what I have learned about myself, and life, post-illness, and through the hard times, and the freedom that financial security brings, I am starting feel the jagged edges of my spirit smooth over, the holes fill in, finally, like a Phoenix rising from the ashes, I can rise and spread my wings again. But like a butterfly coming out of a cocoon, they've needed some time to dry before I could spread them. 

So many things, large and small. Being able to afford salon tresses, and rediscover my passion for fashion, to eat out, to eat healthily and conveniently (because when I don't it just causes major regret, as many of my fellow weird chronic disease suffering readers well know, haha) to be able to hire people to do things I can't do for myself... I feel a little more like the woman I somehow became while I was waiting to live again. I still can't quite grasp my age, I still sometimes have to remind myself that college guys are way too young for me, for example, haha. I still feel surprised and amused when I hear myself say my age aloud. But I do feel more comfortable in my own skin. I don't feel like I owe the world an apology for not having life they think I ought to anymore. My life is what it is, I accept it, it's not my problem if anyone else doesn't. 

Being able to buy things I want, just because I want them (to a certain extent of course!) is amazing. Not having to go without my medications or supplements because I can't afford them, a huge gift. I love my home...it's comfortable, convenient, and best of all, it's ME. I seriously feel like a princess in my bed, it's like a puffy white cloud, with my rouched, white duvet-covered-down comforter, gel pillows, blue sateen sheets, and wool mattress liner (heat is a problem for me while sleeping so being comfy in bed was a big deal...)  The only thing I want for lately is, ENERGY, and well being of my body. There is so much to be done, there has been so much I wanted to get done, and I couldn't wait...partly because I so desperately wanted to be able to rest, just rest, so I felt like I had to hurry up and get it ALL done. It's been a challenge to keep sane...still running on will power, and dealing with other people's stresses along with my own. But I'm learning to take things in stride, and stop letting panic rule me.

Thankfully, my POTS has stayed pretty stable. It still limits me in that I can't be upright a normal amount without consequences. But the random flare ups of tachycardia and near-fainting are mostly under control. (It's recently dawned on me that my stomach issues would probably be a lot better if I took my Mestinon around dinnertime...my Cardiologist had said she wanted me to take it twice a day, in the evening if need be...but either she or we or didn't or I didn't get the connection between the timing and it helping my stomach work normally. Now to make myself a reminder so I remember to implement this on a more regular basis!)

Other nervous system issues (or possibly hormonal?) are still there...tinging hands & feet (and even an occasional numb thumb?!?) have given way to random burning on the sole of one foot. Copious perspiration, which was an issue back in December, was improving, until this crazy skin itching drove me to my PCP and he gave me Prednisone in case it didn't improve, and against my better judgment, a week later I took the first two only to feel it wreak havoc on my body within a couple of hours. Back was the pouring sweat with the slightest exertion, along with hot flashes, nervousness, anxiety, sugar intolerance...I see it all pointing towards an exacerbation of what Alternative medicine calls Adrenal Fatigue, I'm just too lazy right now to fully research it.

But amongst the toughest are still the lack of energy/stamina, and the ease with which my brain power gets drained. (I started a new supplement to hopefully help that, will post something on that soon.) I never get everything done that I need, though I must confess, I probably had my priorities a bit skewed, and am still working on that. For example, I'm supposed to have someone come help me with things like cleaning, grocery shopping, laundry, and cooking if I need it, but instead of getting that all set up, and starting to get organized (I still haven't finished unpacking, and I need to go through a ton of paperwork, file, and get rid of the rest) I've been using up my energy on more wants or items of slightly lesser importance (from getting my car fixed, to getting the best deal possible on a TV) plus I've been pulling Mom duty solo the last few months...We may have had our differences in the past, but I'll be darned if I have a second parent end up, well, like the first one, and she's been having her own health challenges, plus her cognitive function is about where mine was at it's very worst  so that's been another challenge to my energy and brain power as well... I even took us on a mini-vacation, a cruise for 4 days, to keep us both from having nervous breakdowns (oh yes, it's been that tough) which was lovely...but too short! We'd just started to relax when we had to come home! But yes, I highly recommend a Cruise for my disabled friends. It's wonderful to be fed well, have your room tended to, have all kinds of entertainment (from staring dumbly at the waves, to sunbathing, spas, slot machines, shows to shopping) and have your bed nearby if you should feel sick or tired at any time. Yes, the walking was a bit rough sometimes, but you can bring a scooter on board with you if you need to. I'd recommend a bottle of meclazine, too! One day I hope to do it again, and this time, go a little further from home. 

Along with extensive supplement regiment (which I am now cutting back on to check for allergens that may be causing the relentless itching affliction) I have been seeing my regular doctors, along with a new one or two, and doing some spiritual work, which is helping, probably most of all...It's been a tough road, still being sick, and I've had a lot of anxiety about time and money running out...I never want my life going back to the place it was, but I think I've begun to strike the right balance. I feel more grounded. I'm starting to see my precious few friends again and not feel so horrible because I have so much to deal with I can't give them the time they deserve. (Though I'm still having to hold off on having people over for a get-together or dinner, like I so want to, until I'm a bit more organized and have a little more stamina.) Up until last week, I wanted to run off to another country, ASAP, but suddenly, I realize, it's probably not the smartest idea, healthwise, and also, if I get organized here, I will be able to finally get that rest...Just a week or two of tranquility and peace, at home, would go so far, I think...

Today, something silly went wrong, and I found myself muttering that I hated my life...then I stopped, and realized, no, no, I actualy really DON'T! Life is...well...not bad  these days! :)

Is the government finally listening?

http://chronicfatigue.about.com/b/2014/03/19/fda-wants-to-fast-track-drugs-for-chronic-fatigue-syndrome.htm

Happy New Year!

Everyone! Well, things finally worked out, aside from some unpleasant surprises, such as, that one does not get one's entire retroactive Disability backpay in a lump sum...but, resourceful (and okay, maybe a bit desperate at the time!) girl that I am, I found a way to get a more reasonable amount.

Although my birthday still left a little something to be desired (I was too exhausted, family having issues) Thanksgiving was nice, and then, for the first time ever, I got to participate in BLACK FRIDAY shopping! Yessir. My feet, which seem to have taken to getting sprained on a whim, notwithstanding, and the pressure being on that while I have a money now, it's not going to last forever, so I'd best be prudent with it, I just couldn't pass up Black Friday. Yes, by the time I was done at Costco, I was a wiz at maneuvering a scooter around holiday shoppers. (Pretty much like L.A. driving; defensive but aggressive. Zoom zoom! Make way! My dignity restored by a much firmer grasp on hope and increased buying power, I didn't give a darn about the usual people looking at me with judgment in their rude stares, I even had the nerve to stare an older not-so gentleman down who kept openly staring at me at me as if I was personally offending him somehow.)

Anyhow, long story short, I made up for all the missed Christmases and birthdays, caught up on a whole lot of bills and urgent financial matters, and even got me some furniture, not to mention some help CLEANING, my daughter of a clean freak who became disabled and got depressed because she couldn't keep up w/the cleaning's dream come true!

As wonderful as it was, it was probably the hardest challenge of the year. I was a mess. I woke up so tired I wanted to die every day. I would sweat profusely at the slightest activity. And the neuropathic foot pain, so excruciating! I started just buying things w/o being sure it was what I wanted, because I could, and I was so tired. Only that made more work for me later, having to return things... I was running on pure will-power.

And now, as I feared, that I've tried to slow down, it's a crash. I'm so exhausted. The neuropathic issues are getting more annoying. All too often my feet or hands are burning, tingling, freezing...of course, the foot pain, and a new thing. My right thumb has started randomly going numb. Not tingly, not falling asleep, completely numb. I have a blister on my foot that doesn't hurt, and I don't know how it even got there.

Have to wait  a bit for another payment to start going full speed ahead on my quest for health. I've taken babysteps for now. Looking into Small Fiber Neuropathy...Lots of supplements, which I will go onto later...Just wanted to update...More soon!

Goal of Label Changes: Better Prescribing, Safer Use of Opioids

Goal of Label Changes: Better Prescribing, Safer Use of Opioids

I'm really happy to see these changes taking place! Having someone close to me who is a addicted to this class of extended release opiod, and just had a baby w/ NOW makes it a really big deal to me personally. Breaks my heart. Now I just wish they'd go after the doctors that get people hooked on these meds and then would rather keep them on them when they get pregnant than go through the trouble of detoxing them!

Just a Little Longer.

Almost there. Just a little longer. That's what I keep telling myself. You'd think that after all this time, I'd be great at waiting. But I'm so exhausted. Right now, I'm lying down, but I feel like I can barely support myself. I feel shaky. My heart is clopping along like an uptempo Johnny Cash song. I feel slightly out of breath, and I'm getting that uncomfortable sensation over my jugular. The air hunger has been making an appearance. So tired, but it's like I have a tiny bit of adrenaline coursing through me, or am coming down from it. Must keep distracted. The last few weeks since I got the good news I've been waiting 7 years for, have been ROUGH.

October 1st was the day the fates finally smiled on me. Or at least, the day the letter was dated. I almost found myself out on the streets again, but the promise of  a check granted me one more month of shelter. Better still, I finally got my own room! What luxury! Although having a door, especially one that locks, and a bed are  much appreciated commodities, ironically my body has decided the couch is more comfortable. (I guess something about being flatter for my head/neck, but more support for my back, so I can lie slight sideways and lean against the curved back, or put my leg up on the back of the couch. Must have something to do with blood  flow, like sitting with your legs crossed does.) I lie in bed watching TV or fiddling on my laptop too long, no matter how I arrange myself, I eventually start feeling that sick feeling I still haven't figured out, but I'm thinking it's either caused by something pinching in my neck, or lack of blood flow to the brain. Actually, that may be what's making me feel sick now, I spent all day in there.

Oh well, the good news is, I should have the place to myself for a couple of months, come December, so I can lounge on the couch undisturbed all I want; and if the bureaucracy that is our government doesn't screw things up (again) by then I can see what I can do about the bed situation. I was assured I would get my retroactive check last week, but lawyers need to be paid, welfare money reimbursed...at least I got a rent check advanced. That and gas money to go get it. Only my car started breaking down a couple of days before, so I had to fix it just to get out to Orange County. Along the way to that, I got really anxious, feeling like the other shoe would drop, started having 24/7 anxiety, sprained both my feet trying to move boxes by myself, got shoved and hit my head on a heater, had to have staples put in my head, and got a fish, who it turns out is sick. (I really wanted a puppy, but I knew I couldn't get one yet, or for awhile, even with the money, or shouldn't anyway.) So yeah, instead of a puppy, I thought, for now, a fish; fish are easy, and cheap, right? Wrong! I had done enough research to find out that they really aren't supposed to be kept in a bowl, but was too busy researching and planning other stuff, plus I thought I knew what there was to know about these little fishies, because my boss once bought us one for our office at the last place I worked full-time. It seemed easy enough then...Ha! Joke's on me. He is adorable, and a trooper. Not only could I not get him the 5 gallon aquarium with the heater he needs, a few days later as planned, but I can't even buy him the anti-biotics he needs for his cottonmouth disease I think he got from a plant I got him. So I've been stressing and researching alternative or "conservative" treatment methods and applying these cures to him. One day he looks better, the next he's looking a little ragged and fuzzy, the next day better...so fingers crossed...

Meanwhile, my bank account got overdrawn, and I have no more money for toiletries, meds, the gas to get them, I somehow managed to pay the mechanic, keep the fish alive, run errands, and so on but I need a rest! I can't rest though, because I'm too anxious! I'm so tired of running around on willpower overdrive, putting out fires...pushing myself to keep going, so exhausted, and not able to sleep enough. I do wonder if it's just what's to be expected after the year I've had, or if being so close to all the chaos and strife being over caused some innate thing inside of me turn off, relax, veto my superpowers! (Because that's what they are...they have to be because every time I was sure I was going to break or I couldn't take anymore or go on, I was able to reach down and find a way to deal with things...and strengthened resolve to trudge on!) I guess I'm just feeling like it's being dangled right in front of me, but I'm on a treadmill...And I seem to be losing the steely will to keep going. Probably from a little of both...

So I keep telling myself, hold on, just a little bit longer. The anxiety has toned down a bit. I think I can do it. Will power has gotten me this far, and my body hasn't completely collapsed yet. Part of the anxiety is, well, that my life has been on hold for 7+ years, waiting for this to happen so I could have a chance at living a dignified life again, and possibly regaining some if not all of my health. I didn't care if I lived or died anymore. I did unwise things like pick up random strangers who needed a ride home (I was on high alert, but still). On a plane with bad turbulence heading downwards? After the initial panic of "Oh crap, are we gonna die?" My next realization was, it'll finally be over! And the fear was gone. But then, the plane leveled out, the captain's voice came over the loud speaker and told us we were now flying below the turbulence, and I have to say, I wasn't as relieved as I should have been. The bright side? It WAS kind of liberating though, to have no more fear...Oh well. Ha.

When I got the good news I lost a bit of that. Suddenly I have a future again. I have real, almost tangible (compared to before!) HOPE. And fear. The potential for dreams to come true. A future.  Now all I have to do is stay alive! Having my head busted open, my own blood streaming down my face and on my hands drove that home even more. What if I had hit my head a different way, in a more sensitive spot? (Although it would've been nice to just have been knocked out, because that was the WORST pain I have ever experienced in my life, I just rolled around on the floor, holding my head, I think I may have been screaming... (And I've experienced A LOT of different types of pain, with my laundry list of health problems! I'd take a popped ovarian cyst or post surgery pain over this any day.) The cynic in me amusedly thought, wouldn't it be just my luck to die before getting a chance to live again? No. Darnit. I WILL make it. And on my birthday, even if I have to ask them to prop me up, I'm going to get my hair did; a cut, have all of the sad white strands growing like weeds in my dark hair covered up, and some beautiful honey highlights, be stylish and young again... or go spend the day lying in hot springs, providing body and soul with some much-needed TLC, or seeing a spiritual healer to begin to get rid of all the toxic hurts in my bruised soul so both it and my body can begin my road to recovery. Something for me.

I will click the checkout button and finally make use of all the knowledge I have accumulated and place the order for the supplements to help my body balance itself and fight it's way back, and the medical aids to make my life easier, including my very own recumbent exercise bike or cross-trainer so I can do my PT for my POTS to strengthen body's ability to keep my blood pressure up & my heart pumping normally,  regain the muscle I've lost, and last but not least, burn off the fat I've gained through stress and losing my gym membership. I can hire someone to help me prepare nutritious meals and juices I don't yet have the energy for, and rest, peacefully, without having to constantly worry and problem solve to take care of the most simple, everyday basic needs, toiletries, medication, pay my bills on time...

Watch out life, here I come, to take you back. My sincere gratitude to all those along the way that have filled in for the people who should have been there but weren't, who have shown me random acts of kindness, or given me a hand, a roof, a bed/couch,  or a meal, an ear, put up with my stunted social skills, or just believed me. Most of them will probably never read this but I'm sending it out into the Universe, so that when they need it that gratitude may be bestowed on you as a blessing. Love, light, and Season's Greetings everyone.

One in 10 CFS/ME Patients Dies Prematurely- Where are Our Treatments?

http://m.prnewswire.com/news-releases/fdas-voice-of-the-patient-report-on-chronic-fatigue-syndrome-reveals-disease-impact-and-areas-for-progress-226343701.html

Whiplash

No, not again. I think. I did do something weird with my neck riding in an old Jeep Cherokee that brakes like a tank, and my neck is wayyy sore tonight, icing as we speak, but can that really be called whiplash? Maybe when you have FM. That fender-bender I got into on Valentine's Day when a car rolled back into me, was barely a tap, but I had pain within 30 minutes, pain that lasted a couple of months, and that was diagnosed as whiplash. So I really hope not, because now that things have calmed down mostly, it's like I've lost my stamina for stress altogether, and pain of that nature is VERY stressful. And I'm SO tired.

Maybe the real whiplash is in my relationships as a chronically ill person. They are definitely like rollercoasters. Here I was feeling safe, content, relaxing, and as usual...people take a 360 on me when I least expect it. Apparently any kindness is followed by one of those. And I'm supposed to take it, because I'm in a vulnerable position. Unfortunately, I'm not built like that. I don't care what you do for me, chances are I've done things for you too, and that didn't give me the right to treat you like crap, so it doesn't give you the right to either. 

My symptoms of course, are like a rollercoaster too. Up, & down. Up & down. More than anything I am so, so, TIRED. I wake up exhausted every single day lately, I thought it was from the heat, but today wasn't so bad and I still took ages to be able wake up. When I realized my last contact lens had somehow not made it into the case, and I was blind & pretty much useless for the day, I tried to take advantage and go back to sleep, but...of course, then I couldn't! I'd approach the edge of that delicious unconsciousness and tumble backwards into an anxious half-consciousness. Not fun.

Everything else is just coming and going. It seems familiar now, like the hustle and bustle of a subway station. I'm subconsciously navigating through the crowds (my symptoms), trying to get to my destination. If I can avoid thinking about it while I walk through the crowd, it's easier to get from one place to the next.

Emotions run the gamut too. Got a horrible, nearly devastating e-mail from my Aunt, leading us to believe my father was practically a vegetable, that he didn't recognize her, and telling us what horrible children we were, when she knows nothing of what we've been through except what my father has chosen to tell her. But I spoke with his doctor, and got more accurate information. His stroke was not mild, recovery will take hard work and time, but as far as we know he is stable. Our efforts to reach out have gone unanswered, so we have to assume our presence is not desired. If finances and health...well okay, mainly finances - adrenaline and stubbornness would help the rest -- were not an issue that wouldn't stop me. But as they are...I suppose the only option is to stay put and hope for the best, send well wishes, and make it known we are available if we are wanted or needed, are about the best we can do for now. 

Sometimes, given all that we have been put through, it's not too hard to keep our hearts closed and impervious, and sometimes, only the present and it's needs seem to matter, there are too many unanswered questions, and being helpless is excruciating, the anguish, gut wrenching. Time makes things worse for us I think, but hopefully soon finances will cease to be a paralyzing force. Always ups, and downs. Hoping one day, the rollercoaster gets stuck on the plateau...

My Full-time Job...and Other Catastrophes

Ha! I bet at least one of you thought I finally "decided" to go back to work. Nope, sorry. Definitely not yet, and definitely not full-time. I already have a full-time job, which is something people do not understand. Lately I've been hearing it from my brother. He just assumes I should take on things he doesn't want to face because "I don't work".  Honestly, I don't have time to work. Taking care of myself is a full-time task for me, one I can hardly manage to do as well as I'd like. See, this job changes every day. Every. Day. Some things have taken discipline, and work to get right, like taking my medications. (I had to get a pill box. No, not like  M-F one, or an AM PM one. An actual 5x7 box to fit most of my essential medications and supplements. And I still have to decide every day which to take. I get to do things like try to figure out what is causing the pain in my lower abdomen. Is it my bladder (IC)? Is it the Endometriosis or Adenomyosis?  Is my belly distended from one of the above, or is the stomach virus acting up? Why am I nauseous? Actually, that doesn't really matter to me, as long as it's gone, so I gobble down as many ginger chews as it takes. Same if my stomach is upset. 

How badly do I need an anti-inflammatory today? (Are my pinky joints sore & red? Does my neck feel like I have a scorpion attached shooting irritating venom onto the vertebrae?) Is my stomach up for it, will the irritation to my stomach take that discomfort over the edge? 

Is it worth it to take 1 anti-histamine because I'm running out when it usually takes 3 twice a day to keep my allergies managed? Or do I take 2 and hope I find money to buy more sooner?

Did I get distracted and forget to take that beta blocker for my tachycardia? Or is my body just not responding so I need to take another and add something else?

How many days before my period? Is it still safe to take the blood thinning enzymes that help my allergies and inflammation and stomach? Or is it cutting it too close, risking copious bleeding that would be inconvenient and take me back a couple points over to being anemic and lower my volume even more, aggravating my POTS & OI?

I have no motivation and no energy. Must convince myself to eat breakfast. Can I summon the willpower to cook? Will I be okay up on my feet that long today or will it just wear me out and ruin the rest of my day? Will the food agree with me? Or will I end up having to lie down for hours? Which leads to anxiety because I've gotten nothing "productive" done. There are doctors to be called, forms to be filled out and signed and faxed for free or discounted medicine, utilities, stray dollars and cents to be transferred to cover bills and necessities, anything that can ease the stress of the never-ending cycle of running out of medications, money, and getting behind on my bills. 

I'm dying to go to the gym and use that wonderful recumbent bike. To sweat and push myself and feel like there's something physical I can STILL do. But even if I hadn't been having dizzy spells, and my stomach wasn't draining the energy out of me, I need to shower. But I can't shower, because I don't have any clean towels or clothes, so I have to do laundry, and when I'm done with that I'll be too tired for the gym.

Oh, wait, it's too hot to do laundry. I'm barely keeping cool, and my body is not coping as well as I thought with the heat, not regulating properly, hence the dizzy spells, squeezing headaches every time I stand up, crappy balance, and feeling like I'm going to fall over, even hanging onto whatever wall or doorway or whatever.

Did I mention I need to call the over-worked Community Clinic staff to follow up on a Specialist referral, important test result, fax, make an appointment, choose one, or a couple. Wait on hold. Get voicemail that I know from experience won't get answered for a week or two. And billing at the hospital ER I ended up going to because I was in pain & couldn't afford to go to another county for the third time in a week to try and get the tests that I needed that they keep telling me the other doctor will do? I have to stop and rest for a bit.

But it doesn't last long. My car insurance is expired. I'm out of a couple of medications. I need toiletries, from the 99 cents store, if I can recycle some plastic bottles for the gas to get there, but if I leave this late in the day, there won't be parking when I get back, exhausted, and not be able to walk a couple of blocks, with packages, purse, water, etc. It's hot out. And there might be lines. Lines are like a little piece of hell on Earth to people with Orthostatic Intolerance & related issues... Anxiety, sweating, feeling sick, trying to act normal, while shifting stances as subtly as possible to keep the blood from pooling...

And I forgot to talk to my lawyer's office. And a couple of other of things on the lists that are what keep me sane.

My family, who I'm lucky if I can beg and cajole to help me only on the very vitalest of matters, always has some drama or needs to be tip-toed around or want me to do something for them. 

My hair is turning greyer and greyer by the day, it's no longer annoying, it's almost shocking. And I can't afford to dye it. My nails are finally growing normally instead of splitting, peeling, and breaking down to the quick, shorter than in my life. At least that is a good sign. But I can probably kiss that goodbye if I go back to the stress of a few weeks back. It's not that I'm that vain and adore my nails, although I'm told they're impressive (when they're normal) it's just that nails are an indicator of health, and having them growing again was a good sign. 

I finally take a break from all the phone calls and thinking and planning and medicating, and stern prioritizing. I'm starting to feel that odd anxious sick feeling and forgetting to breathe that denotes I've been upright far too long, and I've got to lie down, for real this time, flat, so I turn my attention to the TV because if I let my mind wander, I will find something else I need to do like, at least empty the dishwasher, and end up with my upper back in that weird crippling pain from not enough blood getting to it. Then my brother gets home, just as I'm finally winding down and resting. And find some reason to get mad. Perhaps, that I didn't do the dishes. Which was actually on my to do list, but maybe prioritized too low?

And because, like I said, there is never a dull moment, or happy news in my family, after a day like this, I find out my Father, who hasn't bothered to get in contact in two years since he took off like a thief in the night and dumped the wreckage of his former life in my lap, all because I wouldn't indulge his bad behavior and I got maybe a little hysterical on him after he bailed, has had a stroke. And no one bothered to tell us. For weeks it turns out. 4-5 siblings he has, and each bearing them many cousins of mine, and not one said a word. Not even to my brother, who although he was very hurt and upset by his actions, never said a bad word to him...

So nevermind that I didn't go to South America to try and ride out the time till my hearing back in February because I was too sick and realized if I was going to end up in the hospital I wanted it to be in California rather than the foreign-ness of the 3rd World... and that now I get airsickness, with vertigo that lasts for days afterwards, and travelling just to Texas wiped me out despite wheelchair service, and that last time I went there I got altitude sickness that triggered acute episodes of POTS (and it wasn't chronic back then, like it is now) I was willing to go, because I know my brother couldn't handle it, he takes after my Dad and avoid confronting problems. No money, but where there's a will there's a way I told him. And this is what I do. I'm good at emergencies. I fix problems. I do more than I should for the people I care about, without thought to the cost to me, and then I get nothing in return. And I'm kind of tired of it. And I start to realize I couldn't and shouldn't do this alone. In fact, if anyone is not wanted there, it's me. Later, upon more contemplation and a little research, I realize just how foolhardy it would be to take on such a journey alone with my health in the state it is and the effect the altitude would undoubtedly have, unless I wanted to end up in the hospital there myself! After all, I had an episode so bad just from staying one night in the capital there that I came home on the next flight, because I couldn't stand feeling so sick and having no one really give a darn what I needed, and I swore I'd never go on a trip where I was so out of control again.  Really, I might just end up in the hospital here even before leaving here, I've been having old symptoms come back all this week. 

Plus travelling when sick takes extra forethought & preparation.  And somehow, still, all of this evades my brother. All he can see is how this affects him and that I don't work. 

I know my presence may not even be wanted there, and that my Father is in loving hands, and I have to take a back seat and let my brother step up for once. But I'm so tired of this life, of being sick, and helpless, and having a family that not only doesn't support me, but gives me no hope by the way they live their own lives. And I find myself having that feeling like I can't breathe again. I want to escape this nightmare of life where nothing ever goes right and everything goes wrong, but I can't give up now, and I'm angry that I can't do anything about it.