Saturday, June 30, 2012

Gift Miles Registry Update, & The Question of Asking for Help

Well. Apparently my U.S. Airways Gift Registry is not working! I had a really hard time finding support for it to, all there seems to be is an e-mail address. No matter, I actually found one I like a bit better, for United Miles. Here is the link:
Hope for M.E

I confess, I had some moments of wavering resolve earlier today. I had told me brother about it, and he said that he didn't think people would understand, which sent me down into that spiral of shame, followed by hurt, anger, and sadness. (It's not the fact that many people can't afford to help, that I understand, I think it's the fact that it seems like people won't think it's a worthy, that's what really hurts. I mean, I'm really sick, I'm about to be homeless, and I've been through hell...I know I'm not dying, but I'm certainly not living...and still, it's a fight every day I am alive...)

It's been years now that I've spent dealing with my health issues and the wreckage they've turned my life into, mostly on my own, and I've had to come to terms repeatedly with what seems to be the hard cold facts of the matter: most people just don't care. It makes them uncomfortable, bums them out, they're too busy, or worse, they think I'm a liar, that I could get better if I really wanted to, if I tried this potion, that therapy (and believe me, I probably have) went to bed early, exercised more, or just stopped thinking about it. (Tried those, too! Some even Against Medical Advice!) What they don't understand is, I've tried it all...I guess if they really knew me, they'd know what a stubborn, determined person I am. How much I wanted for my life and that I'd never give up without a fight, no matter what the diagnosis. They'd know I tried going back to work repeatedly, tried working from home, that I've researched like crazy, hunted down every resource I could find to get myself free or low-cost medical care and medicines, and just been to hell and back in general, just trying to survive. It didn't help that I seem to have lost about 50 Twitter followers since posting my link. (But then, there's a reason when I forgot my old Twitter password, I swore I would not focus on my health issues on my new one; I wanted an identity outside that of patient, so maybe that wasn't the right audience.)

But I think what hurt me most while contemplating all this was, that I think part of the reason people seem to get turned off or not take it seriously is that I'm asking for help for myself.I really think that's part of it...Maybe people figure if I was really sick, wouldn't my family and friends be doing everything they could to help me? Wouldn't they be telling people about it and wouldn't they have joined me in my efforts to spread awareness? (Nevermind that it's extremely difficult to make OR keep friends when you're this ill.) I know if it was my child, or even sibling, I'd be organizing my family into a team to do the Awareness Day walks & activities, be raising funds for research, just doing everything I could, but I guess not everyone's cut from that mold, and I have to say, at least my two closest family members do understand I am sick and offer me what moral support they can, limited though it may be. (While a third seems to have happily convinced himself that I am well enough that they can stick me with all their bills & problems and leave the country, but that's another story.) 
So I kind of get it, but I still feel like they do me a disservice by deliberately keeping my illness hush-hush and that this encourages people to form misguided beliefs... Maybe it's just me, but I would want to know if any of my family was wanting for basic needs...I'm not a secretive person by nature, so after years of being dead broke, scrimping and scraping for things like food, clothes, gas and medicine, it's surprising to me that they could plead ignorance.

I don't know why asking for help is such a shameful thing. So I do admit to feeling a bit raw and exposed for a bit there, even contemplated giving up. I'm still not sure if I want to actively pursue this, I was much happier getting my own miles, haha. Actually, I worked on that for a bit earlier, and I think it's what perked me back up. Plus, to be fair, I had a wonderful demonstration that there ARE people out there who care, however much of a freakish hermit I might be with my freakish illness that no one understands, I had some great people come over yesterday (after days of insistence) and perform the miracle of cleaning my kitchen (my most overwhelming challenge; try washing dishes with back problems, tachycardia, and blood pressure that drops when you're standing up and a nervous system that doesn't like heat!) AND they helped me pack up my mother's China. Ironically, I actually find it hard to accept help! (I still hate not being completely self-sufficient. Must be the first-born thing.) And it makes me squirm a little, but at the same time I am SO grateful... Being ill is so complicated! Aside from the physical, it can be a psychological wormhole, I swear. Maybe I'll give up on the miles registry. Maybe I won't.

Friday, June 29, 2012

My New Favorite Site, & New Drug Research

I found this site when googling for a quick description of M.E. for my mileage registry, and I have to say, i was really impressed. I think it is my favorite new M.E. site: : The National Alliance for Myalgic Encephalomyelitis

It describes Myaglic Encephalomyelitis in terms that more accurately reflect the impact and severity of the disease, including key quotes by respected experts such as:

" there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to  that of patients with late-stage AIDS, patients undergoing chemotherapy, or  patients with multiple sclerosis."


"Myalgic Encephalomyelitis (M.E.) is a neuroimmune disease with serious immune and cardiovascular abnormalities with resulting serious CNS (central nervous system) consequences due to brain injury.  The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, and cancer.  The pain, cognitive impairment and exhaustion are often literally unspeakable.  Most times M.E. strikes relatively quickly (within hours, days, weeks).  Once active and productive children and adults are robbed of vitality, with disability ranging from completely bedridden to somewhat functional.  Variable disability usually progresses to premature death."

Now, that last sentence may sound like an exaggeration, but I have read/heard that from many doctors; plus, it's worth looking at the list of related illnesses on the left side of this page, and my mentioning that that is only a partial list of the health problems I have developed in just the last few years...sometimes I personally feel like I am physically coming undone, and I may just scream if I am referred to another specialist and prescribed one more pill or treatment.

Anyhow, I commend the authors of that site and am very grateful for the thorough job they did! I'm going to go update my links!

Another thing I found that was interesting, was a link to a study being done for a drug that would treat the autoimmune-type aspects of the disease, here that is:
 (It's an existing drug called Rituximab that treats diseases such as Cancer, Leukemia, Multiple Sclerosis, and Lupus.)

Out on a Limb

I had some friends come over today to help me get some packing done. I think they were worried I was in a serious state of denial about my upcoming err...relocation because they kept asking when they could come, but when they were gone I was so, so grateful! Help is hard to come by when you are sick, not elderly, don't have a religious affiliation, or a social life. So feeling really lucky!

I was winding down from that (it did require a bit of pushing myself, and I think I got my adrenaline up, because as exhausted and shaky as I felt, I also felt really amped) I made a compromise between my body & mind and lay down to check my e-mail, and I found this link in an e-mail in my newly created "Travel Folder" for this contest: Win 100,000 miles from U.S. Airways . So I entered, and shared, and liked and got my entries...and then I decided to check out the Gift Registry option. I'd vaguely seen it in passing on their website before, but never got around to looking at it closely. Besides, my dabbles in fund-raising in the past have never amounted to usual, people don't seem to comprehend what this illness has done to my life, they see me smiling in pictures, not looking particularly sick, or maybe they just have too much going on in their own lives, or whatever. But really, once I saw the gift registry form, it seemed silly not to try it. It can't hurt, right? I am running out of time after all. I need a place to go, miles to get there with, and as I've mentioned, it pretty much is my dream to be able to travel to another country for more affordable healthcare (not to mention rent). After all, the other alternative means either sleeping in my car, or couch surfing, all anxiety-ridden pushing myself to my limits in fear people who usually only see me for a couple-a few hours at a time don't think I'm lazy or wimpy...or torn between that and not wanting people to see me be sick and wimpy... So here goes nothing...Here's to hoping for High-dose Vitamin C IVs, Myer's Cocktails, and all the other alternative therapies (including R&R) that are affordable in the 3rd world!
Hoping to Heal M.E.'s U.S. Airways Gift Registry

P.S.~ I also get extra entries for that contest if you click on the other link, so feel free to share it: Win 100,000 miles from U.S. Airways

Wednesday, June 13, 2012

Miles and Miles to go...

Before I sleep? Well, that was kind of the case this weekend. I got seriously obsessed with learning everything possible about the art of Travel Hacking. Fascinating, really. The more I learn, the more accessible traveling feels to me. Well, in the financial sense at least. Obviously, I won't be flying far or often unless I get a bit healthier. But 2 hour flights to see friends & family? Not only could I manage that (possibly with some FM-amplified jet-lag, but I can hang...) but it might actually do my health some good in the long run! (Being broke, sick, alone and steeped in mine & everyone else's unhappy is not a good balm for any ailment, I think!) And who knows, if I get REALLY good at this travel-hacking stuff, maybe I can manage some trips to have a real vacation, preferably somewhere with a good alternative health facility nearby, or even just the straight trip to the alternative health facility.

My dream place, if I could get the local rate, is this little hot springs resort in South America that did wonders for me in the day I spent there years back.

It's picturesque, the waters are magically healing, lots of international travelers (to meet or just observe in shock; like the ones wearing a singlet and a speedo last time I went...) a doctor on staff, massage/physiotherapists, cozy cabins with fireplaces, amazing grounds complete with flowing river at the foot of a volcano...and a yummy restaurant that serves organic veggies grown on the grounds. I bet it wouldn't be hard to find an authentic native-american shaman close by, either. (Cuz at this point, my soul needs as much healing as my body, if not more! Call me crazy, but if a mini-healing from a shaman in the OC can make me feel so amazingly different, at least for a bit, I can't even imagine what a natively-born and taught one could do!) It's a couple of hours outside the city though, so after the flight, I'd definitely have to stay in the capital to recover, then endure a couple hour drive the next day, but it'd be worth it I think...

Dreams, dreams, dreams. Well someone like me can't survive without them, and most of my old ones went down the drain years ago, when I found I couldn't get well, along with my 20s. So I shall dream...

If you'd like to help, consider clicking on the image in the right sidebar that says "Become a Travel Hacker". It costs a dollar to sign up for a 14 day free trial, and if you do sign up, I will get bonus miles to put towards my plane tickets/lodging! Or click this link:
(If you have decent credit, it's actually ridiculously easy to rack up miles, but being chronically ill can make you chronically broke if you can't work, and the thousands of dollars of medical bills from when I lost my insurance don't help. but I still found a debit card and a secured card that earn some miles, woo!)

Many thanks! And who knows, maybe you'll discover some of your own dreams are closer than you think!
Oh! I finally got around to revamping the site! I wanted a lighter feel, and after a bit of tweaking, I found it. Yay! Changed the name, too, so, still the same author, same blog, just different look and name. Let me know what you think!

Sunday, June 10, 2012

Updates on LIfe, the Universe, and Well, Everything...or Not Much at All!

Hi Everyone, hope this finds you well! Myself, well, physically, not so great, lots of tummy troubles & flu-y symptoms, a definite rollercoaster. It seems like every time I seem to have things under control, I run out of a vital supplement. So some days I've felt pretty okay, and then the next few I am all weak and sweaty and nauseous and tachy and have to stay in bed. On the bright side, I have two rooms to myself, so I can choose! A nice perk since my bedroom is pretty dark all but a couple of hours a day, and the other one is as bright as the day outside. (Insert smiley face here.) I'm really going to miss the views of all the lovely green foliage around here when I have to go...

Now, aside from that, namely, emotionally, I've been doing well. There's an offer on the place, so no more potential buyer appointments to worry about. (Well, really, that hasn't stopped them from coming, I even took the sign down, but for some reason a few still had my number. Only now I don't feel obligated to answer or open! Ha!) I stopped the IV treatments, because they weren't helping as much as quickly land I'd hoped, and most of all, I couldn't take driving out there on a weekly basis! The original plan had been to get an Rx and get them in Mexico, which is a couple of hours away, so I could get them cheap and have them administered at home, but I think I let myself get talked out of that.
Wisely, or not, I'm not sure...I don't know if it's brain fog if I'm in some kind of crazy state of denial or what but I repeatedly seem to underestimate my limitations...for all my planning to go to South America for treatment, I just realized a couple of days ago that the flight itself would may have been more of a problem than I'd let myself believe. This came about when, after sitting upright on the couch for a couple of hours, obsessing over my latest obsession, Travel Hacking, I started having those nasty symptoms I try and ignore that seem to be my nervous system going haywire from the strain. Just this sick feeling, cold and tingling feet & hands, dull burning ache where my back & neck meet, a feeling like I can't breathe, chest tight, muscles contracted, heart racing...It feels almost like a panic attack, really. (My point being, how in the world would I cope with that after a few hours on an airplane, stuck like a sardine in my Economy seat?) And the only thing that makes it better is lying down FLAT. (Which you can't really do in Economy class, though as I found out, you can in International Business Class!) I shudder to think...Sometimes even the slight elevation of a pillow won't do, the choking discomfort won't have it. I just have to lie down, flat, arms at my sides, and try to relax...a heating pad helps sometimes. I really don't know if this is a CFS---Dysautonomia thing, or if it has something to do with the concussion I had a decade or so ago.

Sidenote: This question has prompted me to do some research on degenerative disc diseases, and more recently, something called Arachnoiditis, an inflammation of the sheath that goes over the spine & nerves, both of whose symptoms seem to intersect with each other, and with mine... I've especially noticed lately that whenever my cervical spine pain does act up, I either have a sensation of feeling like I have a lobster, scorpion (those are kind of arachnoid-like, right?) or something gently but irritatingly clinging around my c- spine. I've also had some nights recently where I just couldn't get comfortable; out of desperation I pulled an old, cheap, curved memory foam pillow out of my closet, and finally that helped, but I noticed that the barely-perceptible but raw sensitivity I felt in my neck seemed to be a variety of nerve pain.

Anyhow, as I was saying, I have finally been getting to rest. No more weekly trips, no more dragging myself to one doctor's appointment after another. no more steeling my will and my brain to think so I can help people deal with lawyers, realtors, worrying about family...  I've been keeping everything to a bare minimum, despite my ever-insistent (and since I got sick, rarely appeased) drive for productivity, and finally getting some real, actual, R&R! For once, I've enjoyed being sinfully lazy and demanded as little from myself as possible. Even showers! AWFUL, I know! But at the beginning there, I just didn't care. I didn't care about anything, couldn't make myself, no matter how hard I worked at it, it took super-human willpower to do much of anything. Ironically, I think it has something to do with tapering off my Zoloft, which the psychiatric intern had amped way up claiming sometimes anxiety took massive doses of before it responded, but it just kept getting worse. So after having it re-filled, I still kept it to a minimum and I don't know if it's that, or the rest, or both, but the anxiety is sooooo much better now, what a relief! Honestly, if my state of mind is good, being sick isn't so incredibly awful. I can make phone calls from bed. It's a good excuse to meditate, and I though I can't be on the computer long lying down flattish without killing my neck, that's not always such a bad thing. I'll take what I can get, because my time here is coming to an end, which means I'll need all my energy to sell stuff & pack & move it.

Which reminds me, my old plan is new again, I think I can handle the couple hour flight to a visit my cousin in a southern state, if she'll still have me. Despite the situation, I know it would be a mistake to stay and move in with my mother, just like I knew it would be a mistake to move here. (Love my parents, but there's a reason I moved out!) So I'm finding as many free ways to rack up airline miles as I can, and refusing to be anything but optimistic that it will all work out. Like a lovely graphic someone posted on Facebook today said, not all healing is physical, but spiritual as well, and laughter is good medicine. (Or something like that!) Who knows, maybe I'll even improve enough to fly further South...that would cut a couple hours off the flight at least...

Well, I'm hoping to revamp this blog a bit as well, the blue is a little well...BLUE for my tastes, so hopefully Blogger has some nice new templates for me to utilize. As soon as my hands stop killing me from the all Travel-hacking research! I am literally, so, so excited! Wish me luck!