Monday, September 27, 2010

Pushing...and Fantasizing

It has been a long tough couple of weeks. I can't believe it's been so little time, it feels like longer...I was having a tough time as it was, healthwise, but what can you do when someone who has no one else is counting on you? Must, push, forward.

And I did, and it's been so worth it. It's nice feeling, too, to feel like you've managed to accomplish something. Ah, yes, I can hear the voices of various family members saying,

"Well, maybe you should try it more often!"

And I wish, once again, that I could get them to understand, that I'd do anything to be able to feel like that all the time, like I used to. And that they could just spend a week in my shoes, and see what it takes to just get through one of my regular DAYS. And that someone as sick as I am cannot run on adrenaline alone. Actually, I'm pretty sure that's how I ended up like this! I ran on sheer will power and adrenaline for about 2 years before ending up here, and I've been trying to grab a foothold on this slippery slope for the last two.

Anywho. I found myself fantasizing about/half planning what I will do when I get my SSDI retroactive payment. I think first, I will get my hair restored to a nice light brown with honey highlights...I've missed it, so sick of people telling me,

"Wow, your hair looked so good like that! Why don't you get it done like that again?"
Hmm, gee, well maybe because I can barely afford a haircut every few months?

Plus, many chronically ill people will tell you just how helpful it is to at least look good on the outside, even if you feel miserable inside... I think I'd do a spa day, too. I'd start some Gentle/Therapeutic type Yoga classes. See a Chiropractor, get a massage...Just anything to cheer myself up and lift my spirits, then start working on using any and all the holistic treatments at my disposal to get better, than start going on some spiritual (meditation, yoga, etc.) retreats/cruises. (I've never been on a cruise ship, but heaven for me is being on a boat in the middle of any nice body of water, so...I'm thinking the joy from that kind of trip might just cure me!)

Don't get me wrong, it's not about materialism, spending money, vanity...It's about not having to stress about every little purchase, every gallon of gas, EVERYTHING. Just getting rid of the stress and trying to find happiness again, because sometimes I feel like SUCH a bitter old hag.

It's about simple things, like having a clean home. Not having to do fancy footwork everytime I run out of a medication or vital supplement. Not having to worry about going to a meditation group that takes donations and not having money for it...Or worrying about what will happen if the person who's supposed to pay the bills doesn't... (Just when I finally believed it was overkill reminding people to pay the utilities...the electricity gets shut off for a day for non-payment, ah!)

Being able to take a treasured pet to the vet for checkups or emergencies...

Peace of mind, so I can focus on getting as well as possible, to seek out happiness, a living hopefully, and just...a life worth living...

Sunday, September 19, 2010

FMGrrl Needs Your Help!

Please pass this on to any of your "Chronic" friends who you think might be able to help, or know someone who can, please.



Thursday, September 16, 2010


lol. I had to share this amazing blog, I think Michelle says it ALL in one post than I ever could!

Wednesday, September 15, 2010

Pets, Walks, & Reiki

Managed the trip to the vet. It was exhausting, emotionally and physically. I got my Father to come with me, but I guess he didn't get that I needed him there for moral support, and for help if I got tired or my brain went on the fritz. As it was he took about 15 minutes to find parking (I had him drop me off, they were doing a little construction, plus I was late and overheating, but it wasn't more than a 30 second walk) and hadn't gotten to the waiting room until after I was called in. (Kinda like my last trip to the ER, where he ditched me to make a phone call without letting me know he was leaving.) Ok, trying not to be bitter here. Just another reason I can't wait for my SSDI to come through though, so I can get some help around the house & running errands if I need it, hopefully, cuz I get about as much help here as I did when I lived alone.

Anyhow, I couldn't remember exactly when the last time kitty ate a whole meal was, and the doctor was putting the pressure on, telling me it was really important to know the exact time, because it was life & death, basically. It ended up being a huge ordeal, because all I had was $60, and they wanted to do X-rays, which were almost $200, plus blood work for another $150. I ended up getting her an IV, which has helped, she ate after we got home, and finally is sleeping, plus I found out cats can take probiotics, so I'm going to try that before I go back to the vet Friday.
I was so wiped out when I got home, it really makes me thankful I don't have human kids, as much as I adore & want them, I can barely handle a cat!

Pets are such a comfort to the chronically ill though! Lately when I'm feeling really lousy physically and don't know what to do with myself, I brave the allergies, grab my kitty, and make her cuddle with me, and I feel SO much better. Silly, I know, but whatever helps, right? She's been my constant companion all these years, I just hope all the sadness and strife haven't affected her too much.

Speaking of which, I had an amazing weekend. I started out Saturday, feeling stuck and resentful and not wanting to be in these four walls. I was trying to find a reason to get out, and I realized I could just make it to the I did, ten whole minutes on the recumbent bike, and a minute and a half on the arm cycle, woohoo! I left feeling SO much better, and decided to go walk in this parky area next to a creek, close by, find somewhere to sit and look at the duckies...I found them all splashing around, took pictures, got teased by butterflies, had a ladybug land on my was lovely. I even did something I can never manage, I had a relaxed walk!
So I did that, and had a sort of wandering meditation (well, I did find a rock overhanging the water to meditate on, and a backless bench to lie on & contemplate the blueness of the sky...then came home filled with joy and with the stuckness lifted. I was giddy, and had tons of (very sporadic) energy when I got home, and was tempted to just go continue meditating, hell, meditating my life away...I figured, hey, if it makes me that happy, and is that good for me, why not? It's not like I have a job to go to...Maybe the extra rest will do me good...

Then Sunday I went to a Reiki Class (an alternative healing therapy that sends energy through your body to heal your chakras & stuff) got & gave some healing, and had some interesting experiences. I left there feeling like none of the bad stuff matters, all barriers were down, and anything was possible. I felt like my writer's block was possibly lifted, fear dissolved, anger & resentments set aside, just free. And maybe a little altered, lol. Anyhow, now I can practice on other people. I'm not sure I have a great talent for it yet (although that might just be because some of my classmates were actual psychics, no fair!) and am not really up to doing it on people as work, but I think I'd like to try some distance treatments, so if anyone wants one, let me know.

An Appropriate Quote

In keeping with the theme of my last post, although sometimes I wonder if my character can withstand all the blows to my reputation my chronic illnesses have made me take!

"Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are."
-John R. Wooden

Frustrated and tired, but hopeful

I've only been up a couple of hours, but my fingers & toes are icy, and my feet have been tingling like crazy. Soon, if I don't get off of this Desktop PC (laptop is unavailable to me at the moment) I'll probably get that creepy feeling like someone is pouring cold water down my scalp. Ickh.

I woke up too early (not as in, like 5 am, but rather early as in, I need 8-9 hours of sleep to be ok, and I got 5-6) for some reason my mind running off on a tangent of suddenly decided to analyze unprocessed information that led me to the conclusion that my Physical Therapist thinks I'm neurotic. I was too out of it to realize it yesterday, but after trying to explain/apologize to her about being late because my state of being suddenly took a nose-dive, I didn't feel like I could drive safely, and I had to persuade and wait for my Dad to get ready and bring me, she asked me if I was seeing a shrink!

"You know, that's known to be a component of that, so it helps". (!?!)

At the time I was taken off guard, happy just to have made it there for my last appointment, and instead of asking her to clarify whether she meant that depression usually becomes a factor in ALL chronic illnesses, or if she was under the mistaken impression that Fibromyalgia, Chronic Fatigue Syndrome, and POTS were all psychological in nature, I told her that the county health insurance "safety net" program I receive doesn't cover mental health. (!)

So annoyed with myself now. And a bit, with her. But more with myself because I could have educated her. Or because I had to? I don't know, lots of mixed feelings. I hate that people are so judgemental. They assume just because I'm capable of getting dressed and putting on makeup and smiling, that I must not be THAT sick?
But then, it's a crazy world, you really can't take people's word for anything these days, so you're almost forced to make a judgement on what evidence you can see...I know I used to, so I can relate. But it still sucks being me, having to cope with stuff like begging my Dad to drive me to an appointment at the last minute because I suddenly feel so exhausted and achy I can't think straight. (Seriously, last time I felt like that, I went anyways, ended up missing the freeway onramp, couldn't decide what detour to take to get back to it, and ended up having to pull over into a parking lot to try and decide what to do, which ended up being to NOT burst into tears of frustration at my lack of brain function and energy, be nice to myself, cancel the appointment, and go home to lie down and not demand anything of myself until I recovered.

Still it makes me so mad though, that Cognitive Dysfunction is SUCH a major symptom of these disorders and even healthcare practitioners know nothing about it.

I've had neurologists and psychiatrists tell me it's Depression, even though research clearly shows the central nervous system is affected, and umm, obviously in the case of POTS & Orthostatic Hypotension, if you're not getting enough blood to the head, that's not going to result in optimum brain function, now is it?

But so is the case with SO MANY of the symptoms of these diseases/illnesses/syndromes, whatever you want to call them. After almost 10 years of research I KNOW for a fact that it's not just me, most others with these illnesses have the same symptoms, what's more, they have been verified by actual, scientific testing...yet only a handful of doctors seem to know this.

(SPECT scans showing blood circulation and brain function for example, studies comparing and equating the Cognitive Dysfunction of CFS with that of Multple Scelerosis...)

But yeah, it's hard not to feel like a nut sometimes with these illnesses. They affect one in such dark insidious ways, affecting how you think, interact with people, socialize...I actually keep to myself these days, because I just don't have the brain power. Just trying to have a conversation with my Mother's neighbor while her kids are running around completely overwhelms me. (Doesn't help that she interrupts herself and me all throughout! lol!) It causes me to do stuff like forget to be polite (thanking someone for dinner & the like, stuff that was second nature to me before I got sick) failing to realize I might return a complement, or that I have spent the entire conversation talking about myself (or alternately not being able to hold onto a thought long enough while someone is talking to have anything to say by the time they're done!) sometimes makes me feel like there's not much of who I was left...but I still hold hope I will get better and then happily quit being auch a hermit and be able to properly interact with people again!

Well, I'm off. Have to go rest up to take my beloved 15-year old cat who can't seem to eat to the vet. Having my feet NOT going numb would help, as would not having to worry about whether I can hold onto her if my Orthostatic Hypotension acts up and I have to grab something in an effort to stay on my feet when I have one of my near-syncope spells...Fun times! Wish me luck!