Wednesday, November 20, 2013

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!

Monday, November 18, 2013

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 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 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.

Tuesday, October 8, 2013

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

Wednesday, July 31, 2013


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...

Sunday, June 23, 2013

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. 

Monday, June 17, 2013


I'm free. I can breathe again. I don't care that I'm not wanted by one sad excuse for a man looking for a way to convince himself he can't love me because he's too afraid. And I have him to thank for it, oddly. He asked me a question, meant to make me understand the rationality of why he couldn't be with me. He asked me, if he told me that the doctor told him he was going blind, and there might be a surgery that would cure it, but it wasn't a sure thing, and his HMO didn't want to cover it and was on his last appeal with them, what would my concerns be? I thought for a second, not knowing what to say, and then suddenly, it was as if my heart took over and started to speak for me. I told him that my concern would be for to help him. I'd help him fight the HMO to get that surgery, and be supportive and reassure him that my feelings for him wouldn't change even if he did go blind. And if he did I'd be there to help him figure things out.

He said something like, wouldn't you expect him to learn how to use a can and read braille, and I said, well, of course, but that's a given; you are a very smart man, so why wouldn't you do everything you possibly could to adjust to your new life? I wouldn't insult your inteligence like that. Obviously you'd do the obvious. Silence.

I had told him already that, asking me to say I would work and clean (apparently his ideal ideas of contributing to a relationship) when I didn't know that I could was like asking him to promise to love me forever...both ludicrous at the stage of our "relationship" that we were in. I told him he was anal and callous and had said very hurtful things to me and I thought he was just scared. 

Then, after his silence, it hit me...I don't think I was even in love with him yet, but I would be willing to give him a chance anyhow, if the situation was reversed. I would still give it a try, there would be no question...if he had been as fabulously amazing as I had thought before all this happened, I truly, in  my heart, know that I would. Even if it was too hard for him to learn to read Braille and he couldn't adjust well enough to find a job and be traditionally productive, as long as he tried, I'd be okay with it. As long as he didn't become mean and cranky, lol. That is how much love I have in my heart, to offer. I don't think that's a small thing. You can pay people to clean. I can still cook a bit, and if it was all I had to do as far as household chores, I think I could do it well, daily with great effort how I am now, but love moves mountains. And I can love, and support, and spread joy, and with some love and support for myself there's not telling what strength I might draw or how much my health would improve, and what I could go on to do. 

In short, I have so much to offer. And if I have that much love and compassion in my heart, why should I settle for any less from someone else? I realized that he absolutely was not the person I thought I was falling in love with, who I confided my entire situation to and still wanted to be around me. He wasn't there any,more, and even if he changed his mind, the fact that he had treated me the way he treated me and thought it was okay, made him irrevocably undesirable. I told him even if he changed his mind, it was too late, I thanked him for asking that question, and told him that now I understood exactly what I wanted, and that he was not who I thought he was.

And I felt a weight lifted off my chest. I felt free. I was afraid it wouldn't last, like earlier in the evening, when I came home happy from the movies and then felt it slipping away...But this time I was nearly positive it would last. And sure enough, I woke up this morning, not feeling  paralyzed, feeling free, hungry for real food, motivated to get to the gym, get out, take what life my body could handle from the world and live...

Friday, June 7, 2013

Relationships with M.E.

It's official. I finally, definitively, officially, actually had a relationship end because I'm sick.
The funny thing is, I never planned on even dating this person, or anyone for that matter, for another year or so, ideally after getting my Disability money and improving the state of my health a little. It just seemed to overwhelming, too scary with risks like these. Too hard to even attempt. Intellectually, I know that there are plenty of chronically ill people, even people with FM & M.E. & even with all the things I have who have spouses. I like to joke that if some of the people on that TV show where they trade spouses can find spouses, then surely there's someone for me, out there, somewhere. I just didn't want to start looking, and potentially failing at it, now.

Things are bad enough now. Today, I had the first episode of generalized anxiety that I can attribute to my hearing coming up. Hate, hate, HATE it. To make things worse, I was too tired to take any anxiety medicine, which tends to make me sleepy, so I had to tough it out. Way too much to do, and was wayy too tired already. Eventually, I went to the gym and worked some of it off there, but I couldn't finish the full time that I set, and my kidneys were already feeling sore. (Recovering from a kidney infection.)

Anyhow. I met this person. Never intended to date him, so I told him all the gory details of my life; my current abode-ally challengedness, my family dysfunction, my illness & ensuing unemployment. I actually thought it might be amusing (in a sick sad sort of way) to see him run off scared. But something strange happened. He didn't. Nothing I said seemed to shock him, and he shared some of the "adventures" of his life as well. Then I started to realize he actually was kind of attractive. He was smart. He gets sarcasm. And we had so much fun, even if it meant I was pushing myself. It was so wonderful to feel alive and wanted again.

It's all so strange. One week he's telling me how much he likes me, can't get enough of me, the next I feel like I'm being avoided. I just am not up to games. To make a long story short, after much frustration and feeling like a crazy, needy, mess of a girl and hating myself for it, I ended it. Or I thought I did. It wasn't too hard after being questioned about what I thought our lives together would be like in 5 years, what would I be able to contribute. I can't work, I can't clean... I was blown away. The crazy thing is, I understood the logic. It's what I would think too. But I would think it a lot sooner, not after one or both of us is starting to fall for each other. Still, I was speechless. True, or not, it still seemed a bit heartless, and worse, completely unexpected, considering I'd laid it out on the table from thebeginning. I'm afraid I was too shocked to defend myself, so I said we should call it off.

Ironically, he would let me go. Right when I'm getting the wounds covered and healing, he starts sending me messages saying he misses me, and I melt.

Earlier today, I was wondering how I was going to get through the next week without having a nervous breakdown. Last hearing, I was anxious for days, and I usually don't stress over things like that till the last minute, when it's too late. Then afterwards, I just felt so exposed, fragile, I kept asking my poor Mother for copious amounts of hugs, and cuddling with the puppy.
Today, I felt so alone for awhile, in all this. And the guy kept texting, but was back to not answering mine...coming up with excuses not to see me. I decided I couldn't stand the confusion and anxiety anymore, so i asked him and it came down to this: If I can't work, and I can't clean house, I'm not a "fit" for him. Rationally, well, it's very rational. But to me, love is more than rational. He kept trying to corner me into saying I would work or clean. But really, I can't make those promises. If there's one thing this illness has taught me, is that sometimes, you can plan all you want, and well..."the best laid plans"...Life has other ideas. Besides, it seemed just too rigid, almost controlling.

I asked, So does this mean you don't believe I can't work and/or I'm not worthy of love because I can't do those things? The answer," no, it just means you're not a fit for me.'I suppose it's possible. And it hurts. But I half suspect it's just cowardice. Fear. An excuse, and a cruel on at that. (And where was this conclusion when I was spilling my guts?)

I could've just said I'd do it, but I don't know, and I don't lie easily. And I don't want to have to trick someone into falling in love with me. Not only don't I not know, what life with M.E. will bring,  but I've gotten to the point where it almost seems arrogant to be so rigid in planning that you really believe things will turn out some way because you planned it. I can't plan anything. Even with the case won, the money, medical care, there are no guarantees, although I have faith, believe it will happen, and believe I can recover at least part of my health and be productive again.
But life with M.E. is in constant flux. So I need someone who will take me as I am. Take all the love I have to give, the smiles I bring to your face, the food I'd love to prepare, my arms around you, my lips on yours. Take the love I have waiting for your children, the joy I bring to holidays I've long missed celebrating properly. Take my listening ear. Let me cheer you up when you're down, take everything I still have to give, I think it would be enough, but if you don't, if your fear and need to control doesn't allow it, I just ask to be left alone, once and for all, to nurse my wounds and steel myself for the week ahead. No more head games, false hope, rational words that cut me to the quick. I'll be fine. I can hardly believe this is happening, especially 6 weeks in to a relationship, it seems bizarre to be forced to plan our future 5 years from now, but I'll be fine. I have more important things to worry about and plenty to keep me busy. I'm so tired of stress. My kidneys are killing me now...
Oh well. I will survive, I will thrive, and I will rise again. And maybe the fear and cowardice of really loving someone will wear off him when I am doing as well as I hope, but it'll be too late...

"One day [I'] 'll have a beautiful life, one day, [I]'ll be the sun, in somebody, else's eyes..." Paraphrased from Black, by Pearl Jam

Thursday, May 30, 2013

A Letter to Patients With Chronic Disease

A Letter to Patients With Chronic Disease

I'm really surprised I've never come across this post before! That first comment (below the post) made me well up, it's so true, just meeting a healthcare practitioner who WANTS to help elicits a feeling of undying gratitude in me, personally... Having a doctor who you can tell your complaints to whom you don't have to fear being given that dubious look by...just means so much just in itself!

The last few years, I've come to feel like a Professional Patient. I'd lost my insurance, moved, accquired MORE chronic conditions...and having had to mostly take what I could get, I came to know well the feeling of dread that comes with going to see a new doctor when you have an incurable illness and symptoms that keep piling up. It's funny, because this letter actually sort of describes what I already do... I go in, hoping for the best but expecting the worst. I steel myself for the sidelong glance, prepare myself to not get too defensive if I see the wheels turning in their heads towards the direction of questioning disbelief... Try to find the balance between patience and the firm resolve to get what I need while not inconveniencing them excessively... Give them the information they need to help me little by little, gauging their reaction to see if it's safe to proceed, or if they've had all they can handle, estimating the dominance of their ego so as not to threaten it and risk them shutting me down, if I should play dumb or hit them with everything I know and hope they will let me be a partner in my own care... It's like an intricate dance.

It can be very exhausting, at times heartbreaking, discouraging, and other times fill one with hope, gratitude and encouragement. (Which is why sometimes, I just need to go awhile without seeing a new doctor; you never know which you're going to get!) And it seems like I'm always seeing one...This year, with all the upheaval, it amazingly has only been one, my Endocrinologist, I believe. But last year brought a Neurologist, a Cardiologist, and a Gastroenterologist, and at the very end, a new PCP. (One of those lovely ones that listens, wants to help, is kind, and makes you so grateful!) I finally gained the trust of my Rheumatologist, who now prescribes the drugs I need without looking at me suspiciously, and my longer term docs, the couple I have, are of course still around because they are good at what they do, understand my disease, and give me hope.) So...yes, interesting to see things from a doctor's point of view and have the dance we do perfectly! And also the fact that Emergency Medicine is SUCH a different specialty...Which I'd come to the conclusion of as well, after having a friend become and EMT and decide that I must be a drug addict or a crazy because if he saw me in his ER he would find nothing seriously wrong with me...which is ironic because he's the one who noticed my POTS-induced tachycardia one night which made me think it was safe to talk about with him. Wow. Big mistake! But anyways, I digress...My point was, I loved what the doc said about avoiding the ER, Good point! (Not that I haven't been tempted lately...Fun times!)  Again, good post!

Tuesday, May 28, 2013

Here we are again...

Wow. Worn out. My immune system is falling asleep on the job these days. I have at least two infections that won't quit, probably another one that is just barely staying under the radar, and telltale marks on my torso probably from that sneaky cuplrit, that crafty little Coxsackie virus that has taken up a more permanent than welcomed place in my body.

The worst one though, seems to be a UTI I have that I'm betting has gone to my kidneys. More than betting, really. Although none has been as bad as that first one I had where I was half delirious, had to be helped out of my apartment to the hospital and had a fever giving my joint pain so bad I could barely walk so they brought me a wheelchair, I have to wonder if it's just a matter of perception. Back then, nausea was a symptom I found so unbearable I didn't eat for 3 days (I thought I had food poisoning or a stomach flu) fever was a rare occurrence, and I'd never had a kidney infection, just a handful of slightly alarming bladder infections.

These days, nausea has become just another of my ever-present symptoms, fevers come and go at will, and I'm all too familiar with my post Interstitial Cystitis diagnosis bladder infection symptoms. More than anything, I just feel weak. And aside from some pangs of pain and bloating, my most alarming (to me) symptom is that my POTS is getting aggravated. Even with my bp lifter, Mestinon, and my Metoprolol, I'm getting dizzy upon standing or sitting, and the same cause heart palpitations, if not tachycardia. I went to a stupid free clinic out here and got some antibiotics from a Nurse Practicioner with a bit of a hostile bedside manner. (She didn't want to give me Pyridium, later turned out that it seemed she didn't know what it was?!? Seriously?!?) And although I told her I was pretty sure it was already a kidney infection (I had to wait a few days to see her, & since the symptoms of IC are just about the same as a plain old bladder infection's...) she told me she'd do a culture & wait & see. (I have the suspicion that to diagnose a kidney infection, you need to do bloodwork, in addition to a urine sample/culture though, no?)

I finally coaxed my brother to lend me enough cash to go see my own doctors, an hour away (literally ran out of gas in front of his place after going to the pharmacy Saturday to get my beta blocker) so hopefully that will go well...although I'm nervous, because I'm afraid I won't be able to afford the antibiotic they prescribe me. (Checked the literature on my former one, which I finished, and apparently it does not have any effect on Kidney infections, fabulous!) So the day after finishing the stupid antibiotics, I go shopping with my brother for a new TV, and I'm sweating and hurting and feeling weak...back to square one. I'm seriously, SO. EXHUASTED. OF. THIS. CRAP.  Of everything being so complicated because I'm broke and underinsured... Jumping through hoops, begging, & pleading to get help when I barely have enough energy to go through the motions...Well, just a couple more weeks left now...and I'm not even sure I'm ready. Well, I know I'm not, because my lawyers wanted me to pay $750 to see an expert medical witness doctor type, which I obviously don't have...Sigh...Tired...

Saturday, April 27, 2013

Living with Bob (Dysautonomia): Am I sick enough for you?

Great Blog Post! (Reminded me that I saw someone I hadn't seen in a long time last night, and they told me, "Well you look very...healthy". lol. [As my heart pounded so hard I was trying to hide I was out of breath cuz I dared to eat and then do something besides lie down afterwards.] I probably shouldn't jump to conclusions, who knows, maybe he thought I looked fat, and was trying to find a polite way of saying it, but considering it was a friend of my brother's, and he must be telling people some good excuse for completely abandoning me to my luck...)

Living with Bob (Dysautonomia): Am I sick enough for you?: Today I read another "but you don't look sick" comment, and it really got my goat ( fainting goat of course). The comment was...

Other Symptoms...

I cried tonight as I drove home. Home. Whatever that means these days.

Funny thing I am. Sick. And homeless. Yet I can still go out on a date. Tired, exhausted. Somehow I can still core a date, after a whole week plus of making the usual excuses, too tired, too busy, not feeling well. But I can still score a date, to a pricey steakhouse. Albeit the Happy Hour Menu. And given I don't eat meat.

I'm always tired lately. No matter how much sleep I get. And it's not the usual fatigue, now I'm actually sleepy, lusting after the luxury of dozing off in peace. But I couldn't. So I chose to be kind back to someone who has been kind to me, and rebel against the sleepiness. 

Funny, again, how many people act like because I could be considered attractive that should solve all my problems. That's not how I work, not how I'm built.
Not genetics, I'm sure, after much thought, but some over-active sense of morality and self-worth I acquired through all the damned reading I did as a kid.

Never to be suppressed, the rebel in me opted to go somewhere I might run into my brother.  Sometimes, I come to the false conclusion that making those who inexplicably hurt me uncomfortable might make some kind of a difference. Might make me feel better. Just because I know I'm making them uncomfortable. Or maybe I just hope at least under some circumstance, I might find the love and affection I've been denied.

After being ignored for most of an hour, I ventured to make my presence undeniably known, and received a greeting driven by appearances sake.

I found my companion at as much as a loss as I was. As kindly as possible I was asked what I might have done to deserve such treatment.
I knew he had to see it for himself to believe me, because sometimes I wonder if I might be a liar deluding myself to not know how I merit such rejection and abandonment. I've searched and searched, and all I find is that maybe I've pushed too hard, wanting the best for him (although to no avail)  and that really, I have done nothing so severe (I've even confessed the worst of my transgressions to see if my take on things was skewed and had it reinforced that I've done nothing so severe...and when I want an opinion, I press for the truth, pleasant to me or not; I strive for insight.)

At worst, I've pushed the guidance and advice that was sorely lacking to me, given lack of guidance our parents gave us both...
But nothing so severe to warrant such abandonment, unless the truth of such abandonment should count as  a transgression.

So as I drove away, mere yards in the wrong direction from the place he whom I called family lived, I cried. 

No matter how much I tell myself there is no understanding it and it's not about me or anything I've done, or failed to do, or even tried to eplain or prove, it still rips open my heart at times.

Never mind that I should have been thinking about what an enjoyable night I had, reality is not ever far behind lately. 
I suppose I should think of tears as a blessing, because for awhile there, I'd thought I'd been through so much I wasn't capable of them.
Not many, but still, it's something. and I am thankful for the few that I have in my life that don't make me feel like a worthless, crazy, psychotic liar. But I will never understand how the people who should don't know me, never have and apparently, never will. 

Thankfully, sleep calls. And again, the feeling that I can't get warm. I will beat it too, again.

Wednesday, April 17, 2013

How to cope with POTS When Homeless! (For real)

Now, I've gotten pretty used to my heart rate going wild at this point, & usually just try & keep going about my business, maybe taking an extra beta blocker. But sometimes, POTS symptoms come in a package deal.

Chest pain, a nasty feeling of pressure on your carotid artery, numb/tingly feet & hands...along w/the usual tachycardia.
Times like these, I find it is a must to not just lie down, but lie down flat. Sitting scrunched up or half reclined in a car chock full of personal belongings just will not do. is a nice compromise!

Find a nice park with grass not too far from the parking lot.

Lay down a blanket, preferably not one you'll be sleeping with.

Spread a jacket over your skirt if you are wearing one & you like.

Lie down & enjoy the view. Trees, grass, sun, wind... Little squirrels playing peek-a-boo...

Actually, kinda nicer than lying in bed staring at the ceiling, willing your heart to slow down, chest to stop hurting, & neck pressure over your carotid to ease up!

Monday, April 15, 2013


This story may be shockingly unbelievable, and has to do with sensitive subject matter involving police, psychiatric facilities, shocking acts and irrational people...

Well. Things just continued to get worse where I was staying. She gave me 2 weeks to move out, till the end of the month. Then the next day, I came home to find the gates that gave me access to my room locked, and all hell broke loose. She wanted me gone that night, which she proceeded to tell me in about 15 insulting, demeaning text messages, and I told her she was going to have to wait till morning. (I'd had a really exhausting day, driving out to & putting some of my stuff BACK into my storage, getting my pain medication from the pharmacy, & picking up my mail, then turning around & coming back; plus it was 10pm; how was I supposed to find a place to stay at that hour, on such short notice, even if I didn't collapse from the strain?)

Yes. So I spent the night getting text messages where I was told I wasn't really sick, it was all in my head; that she wouldn't be enabling me anymore, that if I was sick, it was in the head, that I was crazy, a loser, a mooch, a leach, all kinds of craziness. I stopped responding, and they eventually stopped, and I got to make arrangements with a true friend, to get help moving my stuff out the next day.

I'd wanted to go to sleep early, but I got anxious, wondering if that crazed, nasty woman was going to bust in my door in the middle of the night & do who knows what to me or my things...(seeing as how the room is tiny and there is one foot between the door & the bed, at most, it's not like I could defend myself) and sleep wouldn't come easily.

I got woken up to her pounding on the door telling me to get out, and I began to oblige, packing all the things it had taken me TWO trips to my storage to bring back...she'd told me I could have a yard sale, previously...

She was yelling and pounding on the door while I tried to take my meds, keep my tachycardia from getting too out of control, and pack, and then she started removing all the things & food I'd had stored in the garage refrigerator or elsewhere and putting them outside the back gate, screaming at me the whole time, so finally, I started screaming back to leave me to pack in peace, I'd already let her know someone was coming to help me...finally I screamed a threat at her, something private that she didn't want told, that I'd tell it if she didn't leave me to pack in peace. She finally left.

She started texting me though. Then finally stopped, and later, told me she "didn't want to throw me out on the streets if I had no place to go" which I had to try hard not to smirk at, because obviously, she'd wanted to do that last night, so why not now? And that she would leave the doors unlocked so I could load my things and let the friend in to help. Then she got her kids (and the dog that liked me) together and left.

So I finally felt safe enough to get my car, bring it around back, and start loading my stuff, valuables, like my purse, my laptop, etc., first. Then I popped my trunk, and walked back in to get more things, and heard something at the gate. Relieved, I assumed it was the guy who was coming to help me move. I opened the door to find 4 policemen. I started, confused that she'd called them and left, and then relaxed, thinking she was silly and how much easier it would be if she came back and they were here, so she couldn't harass me any more. So I invited them in and asked them how I could help them, smiling.

That's when they told me that my Mom was very worried about me and was on her way over.

Which confused the heck out of me, because I couldn't understand quite what my Mother, who I purposely hadn't seen in over 6 months after she told me that I should search my conscience because there must be some reason I was sick, and ask for forgiveness or something insane and cruel and fanatically religious to that effect, had to do with anything. I had told the crazy woman that she was reminding me of my mother when she was mercilessly insulting me, and she had offered to call her and ask her to take me my first thought was that she had called her, but then how did that explain the cops? Well, they kindly cleared that up for me shortly.

Apparently, my mother had called them because she and my brother were worried about me. They thought I was going to try and hurt myself. The words 5150 Psychiatric Hold popped into my head, and suddenly I became very wary of any and all conversation or volunteering of information with the 3-4 cops in the backyard with me, and when I ceased to cooperate, they put me in handcuffs! I talked them into waiting until my mother arrived to clear things up to escort me out front and put me in a car, and finally managed.

My mother acted all distressed to see me in handcuffs, but her feigned distress suddenly went away when they told her it was procedure, and if she wanted them to hold me, they had to.

When it became apparent my Mother was not going to be swayed, I must admit, I had some choice words for her. Man those handcuffs hurt my tiny, screwed-up wrists! And then my shoulders started to cramp. Thanks for that, Mother. I had some choice words for the cop, once I realized he wouldn't be persuaded to stop and secure my car, with all my most valuable possessions in it sitting wide open.
However, he soon forgave me and we made friends as we waited for 3 hours in the waiting room of the Psychiatric Emergency Room at the lovely County Hospital, and I eventually got him to loosen the cuffs, and let me keep them in the front to ease the redness and swelling in my fingers, and so I could put my feet up on the chair next to me so my blood pressure didn't get too low. (Turns out, at that point it was quite high, and I had a fever.)

When my crazy mother and her pawn, my brother, decided to show her face, it had just dawned on me, that despite them saying that the crazy woman had nothing to do with it, neither of them had known where she lived...

And that's when I figured out that all this was my former friend's way of keeping her secrets safe. She must have gotten in touch with my brother, gotten my Mom's number, called and told her (like she'd been spewing at me) what a wonderful person she had been, trying to help me out, and how I was a crazy, ungrateful, loon, and everything else my mother could possibly want to hear to make her feel better about turning her back on a sick daughter who had busted her bum trying to make sure she had a nice place to live and money to live off of the past year. (She was extremely upset that when people asked me why my Mom didn't help me out once I became homeless, I told them the truth; that her moods had been erratic the past year, she'd been having fits of temper, probably due to her refusing to follow the treatment for her blood pressure, and that she had been being more and more cruel and verbally abusive more and more often, and that I'd had enough, after spending over a decade in therapy trying to learn how to get along with her or cope with her treatment of me, and been repeatedly told that I just needed to stay away from her, which I was doing well at until I got very sick and needed...someone.)

When I tearfully started explaining it to them, then asking them how they could believe her, knowing the woman and what she had put me through in the past as they did, how they could believe her over me, and do this rather than just offer to take me in, my brother flinched, and I was pretty sure he understood he'd been duped and used against me in a very nasty way...he later got in an argument with my mother and left.

Oh, there's more ridiculousness, but in the end, the cop put in a good word for me, after all, I'd ended up telling him how things had been and from my family's attitudes & reactions I think he saw that it was all true, and didn't buy my dear mother talking to me like an idiot telling me that I needed to be evaluated .As with past doctors, the Psychiatrist saw through her bs, heard me out, and the lack of my brother supporting my mother's story helped too, so she told me she was letting me go. There was no need for me to be on a 72-hour hold, or even stay a second longer than necessary. Of course, then my dear mother disappeared, once we got back to reality, where I'm physically sick and she's back in her own sick sad little world where she, and only she has the right to feel or be sick, and everything I've done for her is forgotten and buried...

I walked out, free, but with no purse, phone, money, or even a sweater for the cold wind that was blowing, feeling sick, and sore as the adrenaline wore off and all the awkward positions I'd had to endure began to make my muscles ache. I waited for a friend to come pick me up, and she did, just before I was about to sign into the regular ER and try to get a saline IV in hopes of stilling my raging, beta-blocker starved heart rate and the overwhelming feeling of malaise and weakness. And I still had to go get my stuff back. Escorted by the cops, as the crazy former friend (who never deserved the title) hung up when my true friend called about picking up my things. She opened the door with a look of surprise on her face. Oops. They don't keep sane people in the Psychiatric Ward on 5150 holds, sorry.

*(At least not in this case, lucky for me, but here is the story of Sophia Mirza, who died in the UK of M.E./CFS several years ago, and was put on a Psychiatric Hold by her doctors. At least in my case, I only have my MOTHER to fear.)

Friday, April 12, 2013

The Unheard

I'm just so worn out. At the place where I'm staying at now, they are getting on my case because they want to control when I sleep and wake up, it wasn't a problem until I let slip that I was up until 1:30 last night. Their electricity bill hasn't gone up, I've been using candles so as not to use the light most of the time, only charging my laptop after 6pm, peeing in a cup to avoid waking anyone up going in the house to use the bathroom repeatedly (my IC is acting up). So not much bother to them. (My room is outside, in the back yard, detached from the house. I don't make noise, either.) I thought I could relax, and had some hellish pain days, sans pain meds, followed by ridiculous fatigue, been pushing myself way too hard, partly because of nerves over not being allowed to stay; decided I needed to take care of myself and I was being paranoid feeling like they'd get mad if I didn't look busy every second and allowed myself to get the rest I needed the last couple of days, in anticipation of clearing out my storage, and boom, now there's a problem. Apparently I must go to sleep when they want and wake up when they want. And yes, the agreement included payment. And I've tried and tried to explain why my sleep patterns are whacky, and that I need to rest after the last two weeks I've had, especially if I'm to go clear out my storage unit. Yes, I know, the early bird gets the worm. But there's no worms for me to catch. If I wake up early, I end up needing a nap or naps. Then I screw up my sleep patterns even more...Oh, and actually, today, I did wake up early. It's not like I make a habit of sleeping till noon...I'm taking a new medication and upped the dose yesterday, and apparently it made me sleepy, because I fell asleep, laptop at hand, answering e-mails...So apparently I must parade around the house letting everyone know I'm wide awake as soon as I wake up. (A tall order when you have POTS and can barely walk from FM stiffness when you wake up.)

I'm just so tired of trying to handle it all.

I asked my brother tonight why they've abandoned me like this, and he won't give me a straight answer.(He said something about my lying to get him to help me move...umm, well if he was helpful, and I hadn't been so desperate, I wouldn't have had to tell a white lie...actually not sure I even lied, just things didn't go as planned, which was a surprise to me, too.) I don't really want his help at this point  (or maybe I'm just telling myself that because I know none is coming?) but I'm curious to know what his reasoning is for this all being okay, because I don't get it. I feel like no one hears me. What do they expect me to do? Magically not be sick anymore? Or maybe they do just hope I'll roll over and die?

Wednesday, April 3, 2013

Life Goes On

So much has happened lately, I don't even know where to begin. Just when I was beginning to despair over having overstayed my welcome on my OC friends' couch, the Universe sent me a huge blessing, in the form of an old friend offering me a space to call my own for a bit, back in the area where I like to joke I was exiled from by my illness (when I had to move in with my Father at his condo in a Sr. Community). She almost reneged, due to misgivings probably from not understanding my illness (I sometimes feel blue in the face realizing that all my attempts at educating friends & family & raising awareness seem to go in one ear & out there other and give way to misjudgement, but that's another post). 

So here I am, and I feel so lucky to be back in my 'hood, with all the familiar places & faces.

Not that I'm not struggling; I had a careless driver roll into me at a light on Valentine's Day, giving me whiplash and awakening the Fibro demon from what I can only call it's remission. Aggravated by all this moving, having to push myself physically because I have no choice, my neck and head are much better, but the old burning pain in my trapezius muscles is back and persisting, along with near-constant all over body aches that I'd happily relegated to a dark corner of my memory. All the stress has also caused inflammation, and some worrisome pain & swelling in the joints of my pinky fingers, so I not only woke up with the old "sausage fingers" this morning, but feeling like I've got Skeletor's hands. (I ran out of my anti-inflammatory, and spent nearly two hours digging through my storage unit last night to bring back things I needed; clothes, shoes, toiletries, bedding...) Apparently, I also have tendonitis in the tendon that runs underneath my left shoulder. But I keep going because I must, because the joy and comfort of my old surroundings & improved situation gives me a hope that helps propel the will power and motivation that make me keep moving despite all the pain and fatigue.

I saw my lovely CFS/ME doc last week, always a pleasure, and this week, my Cardiologist, who was quite optimistic about the improvements in my blood pressure (although the tachycardia still persists) and had some much needed words of...encouragement? I don't know if that's the right word, but to surmise, she complimented me on getting through all this, something very nice to hear because nearly no one has acknowledged the strength it's taken to keep going, very much on my own...especially the last few months, a strength I wasn't sure I even had...I send great blessings to her for understanding and seeming to know that I needed to hear that from someone and how much it would mean. I'm surprised I didn't cry... on the contrary, without the slightest hesitation or discussion with my brain, my mouth turned sharply upwards as if of it's own accord, and I thanked her. 

I had a week or so of tranquility after getting settled in with the bare minimums, but now as I've been reunited with more of my things, there is more organizing to do. I don't feel up for doing it again in a week, when I have to go get the rest of my stuff, and all I can think is that I want all this moving crap to end, but my time here is probably limited, so I know that's a futile wish and I just have to take things as they come. For now, I have a space to call my own and rest my head in, undisturbed, as needed, friends "next door" to chat with when they have the time and I'm up for it, their doggies to play with and a cute curly-headed 4 year old whose curls to tousle; I can call up people I know when I have the energy, and the beach is closer than close, waiting for me to come to it whenever I should need a bit of it's peace-giving, awe-inspiring beauty to give me comfort. 

Today I took the smaller doggy out for a spin (hated to leave the big girl behind, but too sore to handle her) and as he stuck his head out the window, tongue hanging out in bliss, I breathed in the salty air & gorgeous view, and even got serenaded at a light by some very handome (probably) Spring Break tourists enjoying the magic of the golden coast that I call home...Now to bed...Oh wait, I'm already there!

Monday, March 11, 2013

The Long Winter

Okay. So considering it's barely March and it was in the 70s today, I guess not that long. Really it has whizzed by, but so much has happened. I had to move out of the condo I was living in after the foreclosure. My Mother, once again blew up on me for no good reason & in her usual style, went for the jugular, and told me to get a job. See, she works once or twice a week watching kids, so apparently anyone with any disability should be able to, even though it was half killing her to do it. Also, to my surprise, she informed me that I'm not as sick as her. How about that? Just because she has the same bladder disorder I have, but worse (though not as bad as before, thanks to yours truly and her researching a protocol that helped) apparently none of my other illnesses count.

I suppose I've hashed & re-hashed, ad nauseum, the whole to attempt to work or not to work dilemma  Lately, I'd become much less insecure about it, less liable to feel guilty or question if maybe I wasn't trying hard enough. It's not like I haven't tried. The last two times, part-time, even freelance, and resulting in disaster, and leading me to where I am now. I don't think it's wise at this point to risk it and risk losing any quality of life I may have in the near future. I don't want to end up one of those M.E. patients confined to bed, being fed by a feeding tube, barely able to keep that down, with the lights off and requiring total silence because their nervous system can't even handle those stimuli.

Just yesterday, in fact, I found something I could plausibly manage...but only if I didn't have to expend the effort in marketing and selling my services myself. Unfortunately, that is key.

So here I am. Finally. Homeless. I had my only friends in the area unwittingly volunteer for the grisly task of packing and moving me, realizing too late that I might as well have hired professional movers, because I really had to pay them about the same amount. I pulled a hamstring before even starting; wrapped it tight in an ace bandage, then later a knee brace. I started to panic, then realized, hey, what's the worst that could happen? Honesly? I could collapse, and have to be rushed to the hospital, a whole two minutes away, and my family might actually show up & help me out, lol. Alas, with the help of many painkillers, salt pills, and copious amounts of water, and quite a bit of bossiness, I got the job done. Well, mostly oversaw, but still was on my feet longer than I imagined possible. My brother of course, made things much easier by coming to give me moral support, his idea of which was to come, bringing along a friend who had to be at work in an hour, freak out because the truck with his stuff wasn't ready, and go home. I needed him there for two things:  Moral support, and, to drive the truck with his & my Mom's things in it home. He'd hurt his clavicle and couldn't help move, either, but I wasn't even asking him to help pack, just be there, maybe give me a hug every now and then, or some input on which of my Dad's things to keep or trash.Too much to ask apparently.

Anyhow, the days after I was in a sort of shock, staying at my friend's house. Then I went to visit some relatives in Texas, which at first was wonderful. For a couple of weeks there, I felt accepted, like I could just be myself, my post-FM/ME self, and it was okay. I had a family, I was part of something, I could help them when I could the way they helped each other, and me, and it was oh-so-wonderful. I was even considering renting a place & staying there, but then expenses started to get the better of me. And they began going through even tougher times, and suddenly I didn't feel so welcome and knew it was time to go home. My original plan to just keep travelling...well honestly, by that time between the effort of trying to keep up with normal people activities, and the stress of feeling like a burden, I wasn't doing so good, sweating like mad non-stop, hot flashes, tachycardia galore, POTS in full-effect. And I kept getting "normal people" sick. Plus, Texas, at least the part of it I was in, seemed like another world, like a 2nd world part of America that I hadn't really believed existed, and suddenly travelling on to the 3rd World just seemed like a BAD idea. Plus, if I was going to be homeless, or collapse I'd rather do it in Southern California, where that ever precious commodity, my car, was waiting for me, as well as decent medical care.

So here I am again. Still sick. Still fighting the system (my appeal was granted, yay!) and once again, staying with people who more than likely are getting pretty sick of me. And all I want to do is go home, a place which doesn't exist, still occasionally puzzled when I wonder why my dozens of family members don't seem to care. I've always been strong, because I've had to be, but I am so over that. Why is it no one cares? Do they not believe I'm sick? Am I that awful a person? Are people really so self-absorbed these days?  Even if I wanted to risk ruining my health completely, what would trying to work now accomplish? Not like I'd be able to afford a place on a part-time job. The lil devil on my shoulder says, c'mon do it! We'll show them, when we collapse and have to go stay in the hospital and truly need live in help, mabye they'll finally understand. But the rest of me says, no. The only one who suffers then is me...I think I need a nap.