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...