Monday, August 24, 2009

Adrenal Fatigue

Sound familiar?

Symptoms of adrenal fatigue:

* Morning fatigue -- You don't really seem to "wake up" until 10 a.m., even if you've been awake since 7 a.m.
* Afternoon "low" (feelings of sleepiness or clouded thinking) from 2 to 4 p.m.
* Burst of energy at 6 p.m. -- You finally feel better from your afternoon lull.
* Sleepiness at 9 to 10 p.m. -- However, you resist going to sleep.
* "Second wind" at 11 p.m. that lasts until about 1 a.m., when you finally go to sleep.
* Cravings for foods high in salt and fat
* Increased PMS or menopausal symptoms
* Mild depression
* Lack of energy
* Decreased ability to handle stress
* Muscular weakness
* Increased allergies
* Lightheadedness when getting up from a sitting or laying down position
* Decreased sex drive
* Frequent sighing
* Inability to handle foods high in potassium or carbohydrates unless they're combined with fats and protein

That site explains how it all comes together really well, but I liked this one for the supplement regiment:

I'll post what I've started taking later :)

Roller Girl

Ah. The day I discovered the foam roll...I was sooo happy. The YMCA trainer was showing me how to use it to stretch out my thighs, but my back got jealous (like it does when I put Banalg pain cream on my arms or hands) and I swear it was practically crying out, "Now me, me, me!"

And it was RIGHT. I lay down on it, knees bent, and just rolled up and down.
That first time, my back cracked and I felt something falling back into the place where it should've been. It was a GLORIOUS feeling. Who would have thought it'd be so easy to give yourself a back massage? Plus, rolling it under the fronts of my felt like the muscles were so tight, they'd been meshed together in knots, and the rolling action worked it all out...My body was thanking me.

And the trainer was right. I've had this thing, where if I try and do the recumbent bike, within a couple of minutes, my thigh muscles lock up into a cramp-spasm type thing where I can barely walk. No amount of stretching ever seemed to help. But that magic little foam roller? Voila!

So here's a link to an article about using foam rolls and other PT aids for exercise even a weakling like me can do!

What a WEEK!

And thank goodness it's over! Even though I've been sick for several weeks now, this past week was the roughest yet. Antibiotics for my kidney infection weren't working, so I had to go get more. At that point, I was overheating, having hot flashes and cold sweats, and feeling nauseous. Somehow, I got myself to the doctor's and even got in a good mood. It was weird. I honestly think after spending so much time home in bed sick and not seeing anyone but my Dad, and briefly, my brain was just craving some human interaction like mad!

I guess that's part of why this whole "sicker than usual" spell has been so tough. Prior to it, I had at least 3 doctor's appointments a week. (No, I'm not some kind of crazy, it was physical therapy, or my allergist, or a therapist, lol. Just trying to treat as much as was treatable any way I could. Physical Therapy did wonders btw, I'll have to talk about that!) So, pathetic as it may sound, at least I got out and got to talk to real LIVE people at least a couple of times a week and feel like part of the world. I used to be okay with sitting at home alone, but it's just so great to be around people, get distracted, joke, laugh...But lately, I've had to give up on that. First because of financial issues, I had to cut back to bare minimum appointments, and of those, I ended up asking to be billed for most of the co-pays. I'm in such a hole!
Then, I've actually, without a doubt, been far too sick to do much. I kept trying, and trying to do stuff, because I'm stubborn, pig-headed, and that whole guilt thing, but after a few weeks of being sick...I could almost say it broke me a bit...but on the other hand, there was some of that whole "if you can't beat 'em, join 'em" thing going on.

I just had to come to the realization that, okay, I'm really, really sick right now. Nothing else to do but face it, especially when it's so bad I was starting to avoid even checking my e-mail because being upright was making me feel so ill.

Ah, yes. Dysautonomia. My blood pressure was no lower than it has been since I started on the Beta Blocker, but I could tell it wasn't staying up. I was having headrushes galore, to the point where I was starting to get headaches again, and being upright, sitting at the computer was making me feel just plain ill. It's almost like this anxious feeling, it seems like it's hard to breathe, the muscles in my upper body get completely tensed up, and I just feel sick. And an overwhelming urge to lie down.
It got to the point where I was getting all shaky, like a few weeks back, so I decided I'd better listen and keep lying down, cuz that stuff unnerves me.

PLUS, the UTI was getting so bad, my back was killing me, all the way around actually, and my stomach was swollen enough so it looked like I was pregnant, though I was hardly eating. (Eating made the pain worse, kidney infections seem to screw up one's digestion; at least with me they do...)

I started to get better after a day or so of antibiotics, but then the Dysauntomia flared back up, complete with a resting heartrate of 130. It was so bad I felt out of breath, like I'd been running. I figured, I've gone up to 150 on the eliptical trainer before (back when I was well enough to do that for 20 minutes or so) and there's a hospital less than a mile away, so if it got worse than that, I'd go.
(I think it may have partly been because I ran out of my Beta Blocker the night before, plus, in retrospect, I now see that infections always trigger the Dysautonomia symptoms.)

So all that was fun. I medicated myself any way I could. I had some Celtic Sea Salt, extra pouches of Emergen-C, and vitamins/supplements galore.

I've come (back) to an old conclusion. I need to help my adrenals. Yes, I may have chronic enterovirus infections, but they don't usually make me this sick. And in the past week, I've had different types of I knew it was my immune system that was having issues. Plus, the Dysauntomia always gets better when I treat my adrenals. I've had a couple of different holistic doctors tell me I was having adrenal troubles, and I KNOW one supplement for them that was key in getting me out of a Dysautonomia flare that was the worse ever (after my last "real" job).

So even if the virus is the cause of everything, treating my obviously exhausted adrenals SHOULD help right? Adrenals regulate your immune system, your digestion, blood sugar, BLOOD PRESSURE, electrolytes, stress response...all of which I've been having trouble with...I am happy to report, that I was pleasantly surprised to find that w/the purchase of some Whey Protein and a box of Emergen-C, I actually have many of the supplements that can help support my adrenals already! (At least for a couple more days...)

So I'm going to work on that, but most of all, just relaxing and accepting that I need to rest, and it's ok to be lazy. Sheesh, that Catholic guilt really does NEVER leave you! Hoping to start some chair yoga tomorrow. Must find my Zen, wherever or however my life is destined to be...

Tuesday, August 18, 2009

Pfizer Launches Free Medicines Program for Americans Losing Employment/Insurance in 2009

Pfizer Launches Free Medicines Program for Americans Losing Employment/Insurance in 2009
by Pfizer Inc. (news release)
June 30, 2009

The company's employees inspired this plan to help people continue Pfizer therapy [including the fibromyalgia drug pregabalin (Lyrica®)] during unprecedented economic times. See the eligibility requirements, contact information, and a link to the printable application form, below.

NEW YORK, May 14, 2009 - Pfizer Inc. announced today that it will launch an innovative program to help eligible unemployed Americans and their families who have lost their health insurance maintain access to their Pfizer medicines for free. The inspiration for the new program, called MAINTAIN™ (Medicines Assistance for Those who Are in Need), was generated by Pfizer employees who were witnessing friends, family and neighbors struggle to make ends meet after losing their jobs.

“We all know people who have been laid off recently and have lost their health insurance, making it difficult for them to pay for health care,” said Dr. Jorge Puente, Pfizer’s regional president of Worldwide Pharmaceuticals, a leading champion of the initiative. “We thought there must be some way we could help recently unemployed people who are taking Pfizer medicines to continue treatment during these challenging economic times.”

The program, which applies regardless of prior family income,

• Will be open for enrollment through December 31, 2009

• And applies to eligible Americans who have become unemployed since January 1, 2009.

It is designed to help recently unemployed Americans and their families:

• Who have lost their insurance

• And who are taking Pfizer medicines to continue treatment for free for up to one year. [See eligibility requirements, info for those in need of medicines made by another company, and a link to view the application form, below.]

Nearly 46 million Americans lack health insurance coverage, and that number is increasing as unemployment rates reach their highest levels in 25 years.

Pfizer employees proposed the idea of MAINTAIN to the company’s senior leadership team just within the last month. Pfizer employees also asked to be able to do their part by donating their own money to the program, and the Pfizer Foundation will match their donations.

The current economic environment has added considerable new stress to the daily life of millions of hard-working Americans, and our colleagues are responding to help their neighbors in the communities where they reside,” said Jeffrey B. Kindler, chairman and chief executive officer of Pfizer. “The speed with which we created and approved this program is proof of our commitment to help people access the medicines they need to live healthier lives. With the launch of this initiative, which I am proud to say was proposed by our colleagues, we are doing what we can to ensure that recent loss of employment does not preclude people from managing their health.”

Eligibility requirements of the new program include:

• Loss of employment since January 1, 2009

• Prescribed and taking a Pfizer medicine for at least 3 months prior to becoming unemployed and enrolling in the program

• Lack of prescription drug coverage

• Can attest to financial hardship.

People who qualify will receive their Pfizer medicines for free for up to 12 months or until they become re-insured (whichever comes first). More than 70 Pfizer primary care medicines will be available through the program.

To make it easy for people to apply, the program will be integrated into Pfizer’s existing family of patient assistance programs called Pfizer Helpful Answers®. A single point of entry makes it easy to get help:

• All of Pfizer’s patient assistance programs, including the new program, can be reached by calling a single phone number (1-866-706-2400) or by visiting

• Those who contact Pfizer Helpful Answers in need of medicines made by another company will be directed to the Partnership for Prescription Assistance, a pharmaceutical industry initiative that serves to raise awareness of, and boost enrollment in, more than 475 public and private patient assistance programs.

The new program will be fully operational on July 1, 2009. However, people in need now can call 1-866-706-2400 for help. MAINTAIN is a part of Pfizer Helpful Answers, a joint program of Pfizer Inc and the Pfizer Patient Assistance Foundation. [To review the printable application form, click here.]

Source: Pfizer Inc. news release, May 14, 2009

What keeps you going?

So I just had a mini meltdown.
After bursting into tears while talking to a rather insensitive, self-important doctor who told me some people live with this for 20 years...

I won't be one of those people. Not the way my life is going now.

I really don't have anything to keep me going.

As I see it, I'm running on a whole lot of stubbornness, and a bit of hope.

What else should there be to keep me going? Don't tell me my religion, because I don't believe in it. It doesn't make sense, causes lots of wars, murder, prejudice, and fighting. I've studied many different religions, so I know what I'm talking about. It just doesn't work for me. It's occurred to me that perhaps, I could be being punished for this belief, but then I remember that in my 17 years as a devout Catholic who would go to mass on Sunday and jerk awake with a start if I dared fall asleep w/o praying, bad things still happened. Plus, it doesn't go along with how religion supposedly works.

I guess there's a wee bit of faith thrown in w/the hope. I have faith that there must be a reason for this. Maybe I even chose this life myself, to learn some particular lesson. So what if I Kevorkianed myself and found out I had just totally sabotaged my own plan? lol.
On the other hand, I COULD find out it was all a game; me and a couple other souls just messing around to see who could stand it the longest? lol. 50-50 chance, really. I'm already in my own personally customized hell as far as I'm concerned, so...

I guess I'll give it a couple of years. My hopes are mainly pinned on my Social Security benefits outcome. The retroactive money, plus benefits I'd be entitled to, would again allow me to live a somewhat normal, self-sufficient life, the money, possibly even allow me to get well, or at least better, there's no doubt in my mind about that...
Plus continual financial stress of the last couple of years would finally be gone, long enough, hopefully, for me to find a way to get on my feet, and I could go back to having a normal life, filled with great people to care about and be cared for, hopefully, some pint-sized. Being attractive is just another cruel joke piled on top, after all, if you never get out...

Tuesday, August 11, 2009

12 More Pages: Great Dysautonomia Info on Facebook

Just wanted to quickly share the Facebook page of Tyler Gurney, which I have been finding very useful and enjoyable. It's always great to have a young person share their experiences with Chronic Illness, and he is doing a great job :)

Here is his website as well:

Gratefulness and Acceptance

Well. So today has been a far better day. I stayed up late last night, enjoying chatting with friends online and playing on one of Facebook's fabulous apps. (I am so grateful for the Internet...I'm not sure what I would've done in the years since I got sick, if it hadn't been for the wonderful people I've met online who have given me the love and support that I haven't always been able to get from my offline friends and family. Seriously. (Although some of them are friends and family as well, love you guys!)

So anyways, today I let myself sleep in. The days have cooled off a bit this week, and this morning felt like heaven, I just stretched all over my nice cool sheets and decided to stay in bed as long as I wanted. When I finally did wake up, I felt surprisingly rested and peaceful. I didn't feel fabulous, but it didn't phase me. It was quite surprising, as I went about my business feeling breezy and relaxed. (The only thing I've done differently, is that I took a supplement called Vinpocetine, which I'd originally bought to try and combat the cognitive dysfunction I suffer from; it didn't seem to help, but it came to my attention that it could possibly be helpful with the Orthostatic Hypotension, by increasing blood flow to the brain. Sounds good, right?)

I had a nice comment from one of those friends who I actually know in person, but who has been an endless source of support and kindness and whom I keep in touch with mostly online, and she spoke of "accepting where you are", which reminded me of a quote from Laurie Edwards (author of Living with Chronic Illness in Your 20s and 30s)that said just about the same thing.

It helped when I read it, but this week...well, I just started seeing things as longer term. For example, I've been sick for a month straight now...Haven't been able to accomplish much of anything, and it was driving me insane yesterday. I kept thinking how it seemed like it would never end, and the fear snuck in that things might continue this way...I began to think that in general, the last years, nothing I try works out. Working, going to school, working from home, dating...
I keep fighting, and I have so much anger inside sometimes...
Today though, reading what my friend wrote, and thinking of all that, I remembered a therapy session where my counselor made a metaphor of my coping style with someone trying to dig a hole to China, lol. I wasn't getting anywhere, so maybe it was time to stop working so hard, digging myself a deeper hole, lol.

Lately, I've felt driven to just giving up. I've been feeling like every single day is such a battle, just to get through...even w/o getting anything significant done. I keep thinking, maybe I should just give up and stay in bed all day, not try and do anything at all. Well, yeah, that may be a slight exaggeration, but maybe it wouldn't be such a bad idea?

Stop worrying about time slipping through my hands, not accomplishing anything that I wanted, stop being so angry, stop stressing...maybe that's what I need to do now.

Anyhow, that heavenly state I was in didn't last. I'm in pain again. It's definitely a UTI, and I have no money for an analgesic from the drugstore, or to go to the doctor. But I'm not that stressed, and I am still SO grateful for my morning of peace and relaxation.

Monday, August 10, 2009

Coping, Acceptance, and Dating

I am utterly exhausted. A problem I have, is I have a very active mind. I raised myself with the philosophy of living life to the fullest...nothing makes me happier than a productive day, working, playing, whatever, as long as I feel accomplished. I can't seem to get rid of that notion, it seems to be an integral part of who I am.
I remember a few years back, when I'd only been sick for awhile, having a summer when I was trying a new treatment, had just recently stopped working full-time, and I was so exhausted from the moment I got up...that all I could manage was to move myself to different upright positions around the apartment. From bed, to my futon. Once I was fully awake, to my computer chair, once my knees started hurting, outside to the balcony onto a chair with a leg rest...back to bed, and so on. All the while I was thinking, planning, brainstorming for ways I could manage to work at home successfully. I was confident I could do it, once I had the energy. My last job had allowed me the freedom to wear many hats, and despite having my brain so burnt out I couldn't concentrate or remember enough to be of any use by the time I went on sick leave, it had given me to the confidence to know that I could do anything I set my mind to. So I planned, & plotted. And waited.

These days, I just don't know anymore... I still have ideas...I just can't seem to set them in motion. When I've come close, I've worn myself out...
The problem I face these days is, that I never can tell how I'm going to feel. I beat myself up mentally, telling myself I'm just not trying hard enough, not getting organized enough, not planning well enough, not pushing hard enough. And then I have a day like today. I sat for awhile to allow my body and blood pressure to adjust. Had breakfast. Checked my e-mail and Facebook. I'm still having unexplained pain (I can't figure out if it's a UTI, or the Endometriosis acting up) in my lower abdomen, which gets worse if I have my knees up in a reclined position, so I gave up on the gym, as the only cardio I can do right now is the recumbent bike (treadmill hurts my ridiculously sensitive feet, plus would allow blood to pool in my legs, if I'm already feeling sick (POTS) then that would not seem like a smart idea...eliptical trainer is out too as the up and down motion seems to aggravate that as well).

So I decided to just try putting my feet up against the wall while lying down, to get the blood out of my legs and back up to my upper body/brain. That seemed to help. So I tidied up around my home, mostly just put things away or in the trash, which consisted of picking up something in one room, taking it to the other room, forgetting why I was there or why I'd picked something up, where I wanted to put it, and repeating with different things in different rooms. Then I'd start to feel sick. I'd sit down for a bit, then get up and start doing things again. Then sit. Check my mail, because my mind was too restless to just sit and watch TV, and my lower abdomen hurt lying down in the recliner, and there was nothing in my bedroom to keep my mind occupied...I made progress though.
Finally, I made it to the bane of my existence. Clothes in my room I'd repeatedly put on my bed to try and fold and put away, but that I'd repeatedly ended up not doing for about two weeks. This is where the guilt and self-reproach comes in.
Until, finally, I'm almost done folding, and I find that my back is killing me, I'm out of breath, and I feel like I need to lie down NOW, and I struggle to finish, but I do, and then I lie down. I don't lie down for long, my mind gets bored. But the fatigue is overwhelming. I'm exhausted, and on the one hand I can't believe it, while on the other hand it suddenly makes sense why I hadn't gotten it done. Maybe I wasn't being a wimp? All the while my conscious mind refused to admit that it knew this was why, my subconscious still believes I am a normal person, that it shouldn't be such a big deal. And this is the dilemma I find myself in. This is the battle I find myself exasperatedly fighting day after day.
It occurs to me that something is wrong with me. That after 7 years of dealing with these health issues, I should have adjusted. I shouldn't feel guilty, I shouldn't be questioning myself, or caring what others think of me. But I haven't, at least, not completely, and I don't understand why or how to fix it.
I'm a problem solver, a fixer, but I can't fix this.
I'm stuck. No matter what plan I come up with, it backfires, because the plan must be different every day. Some days I push, and I reap the rewards. The very next day, pushing might prove to be the completely wrong choice.

I drop myself into the computer chair. I can barely hold myself up, but I need a distraction to stop myself from thinking myself into a scream of frustration.
My phone goes off, and I have a message from a guy I've been talking to, dating being part of my latest plan to make my life worth living again. He's wondering where I've been, if I got his message. I try to think of an answer other than being sick, and I end up overwhelmed and I can't bring myself to check his msg online. I don't want to scare him away, it's not time to risk it yet.
But it all shouldn't be this hard, should it?

Saturday, August 1, 2009

Back from Hiatus!

Hi everyone! I'm baa-ack! I know it was a long hiatus. The holidays were really, really tough on me this past year. To be honest, by January, I was feeling like a bit of an emotional trainwreck, so I didn't want to risk subjecting any readers I might have to all of THAT!

So. This is the NEW fibrogrrl blog. You might have noticed, I changed the name. I really loved Phoenix Rising, because it seemed to fit so well. BUT, my rising from the ashes has been very slow to date, AND it just so happens that there is ALREADY a blog called Phoenix Rising, and it's about CFS.

Fibrogrrl, if you're wondering, stems from a couple of different things; first my fellow Gen-Xers may remember the whole RiotGrrl movement. Although I'm not sure I'd call myself a RiotGrrl, a big part of my life pre-Fibro was dedicated to the pursuit of and enjoyment of good music. I was a grunge girl, wore babydoll dresses with 20-hole Doc Martens. Or with pink schoolgirl skirts and knee-his while smoking in the parking lot of my high school. I listened to Hole and Human Wast Project, and wanted to be sure everyone understood that girls could rock just as hard as the guys, and that we could run in music industry circles WITHOUT being groupies.

Most of my credit card charges were for schoolbooks and concerts. I even had a fabulous internship at a music mag where it was my job to go to concerts and shows and give out free stuff or execute marketing promotions between the magazine, and partners which included radio stations and bands (none other than LA.'s World Famous KROQ, and the likes of Metallica, or Korn!)
Pre-Fibro, music was my life. I judged people by the music they liked, picked boyfriends and friends the same way. Sounds crazy, right? But really, the type of music a person likes says a lot about a person. Or so it seemed at the time, lol. Those were some good times. I lived, breathed, and dreamt music. I could go the Sunset Strip and go to any of the famous little clubs you hear about anytime a cool band was playing, and I would know someone there, whether music lover, person in the band, a journalist or mangement, and various other people from the music industry. I rubbed shoulders with soon-to-be rockstars and sometimes the actual thing. And no I was NOT a groupie, lol. (Actually, you had better not have even used that word with me!) I actually hated how full of themselves guys in bands could be, so I rarely gave them the time of day...I left them to their true groupies. I just wanted to be around the music, and the people who loved it.

Okay. So, the other part of Fibrogrrl is that, well, to be honest, living with a chronic illness, much less a few of them, sometimes it CAN feel like you need Superpowers or something. It's not something like Cancer, where you (usually) go through a set period of hellish treatments (which at least are proven to work) and then you're either better, usually for good, or you are no longer of this Earth. Everyone understands the severity of Cancer. They know it's not always visible on the outside. They don't question a person with Cancer for managing to pull off looking normal, like so often happens with FM and other invisible illnesses. (It's like, sheesh, well excuse me for using makeup, putting on my best clothes, taking extra pain medicine and managing to smile for family and the cameras for a couple hours on holidays, sure that MUST mean I'm just fine, right?)

With chronic illness, you have to reconcile yourself with the fact that you may be feeling almost normal one day, or several even, and then feel like you honestly are trying to summon Super-human might just to get started with your day or accomplish the most trivial of things the very next day. Sometimes just getting through the day almost feels like too much...

I recently heard or read someone remarking that they thought it would be better to just have a leg amputated than live with Fibromyalgia, because at least then you would know what to expect, you could deal with it, and get on with life. I have to say I agree...Awful as it sounds, even w/o a prosthesis, you would at least know what you were up against every day, and learn to work around it. The scenarios with my particular group of illnesses are so varied, I can't seem to get a handle on them, and it drives me nuts!

I'm stubborn, a fighter, a problem solver. I'm used to being the underdog. But I was also used to meeting my goals, getting to the finish line. The hardest thing for me to accept is that my health seems to be a problem I cannot solve. I've tried so many things, evaluated, re-evaluated. Pushed myself, forced myself to rest...Nothing seems to work. When I have more than a few good days sometimes it seem like a cruel joke...I get so happy that I can be a productive human being, feel useful again, not feel like a failure, let go of the guilt that plagues me for not being able to work a normal job...I begin to think maybe I just wasn't pushing hard enough before...that I'm just wasn't being disciplined enough with myself. I start to have hope that I can find a way to make money despite my health...and then it all comes crashing down. Hopes crashed, coping skill sets must be switched. No amount of pushing will help, because I just physically can't. And did I mention that even the good days are challenging to get through?

Anyhow, so that's what that change and name are all about.

Stay tuned for next time, an update on my battles with Dysautonomia and Chronic Enteroviral Infection. Fun stuff. lol!