Saturday, November 14, 2009

It's just hair. It'll grow back.

Oomph.


I have no hair. Seriously. It started coming out in big clumps this week due to all the meds I'm on & I got fed up. Unfortunately being a cosmetologist I had clippers & went to town. It was highly emotional. It's so weird how much of our self esteem is attached to our hair. I hadn't ever thought about it much before. It was very freeing in a way too, though.




No more checking in the mirror to see if the bald spots are showing. No more looking at it hanging lifelessly or cleaning up my fallen hair from the floor everywhere. And it takes two seconds to "do my hair". Ha!

Just thought I'd share this milestone. I did it last night & am feeling MUCH more sane about it this morning than I did then.

It's just hair. It'll grow back. It's just hair. It'll grow back. That is today's mantra.

Monday, September 21, 2009

Lucy in the Sky with Diamonds has Lupus too...

Real `Lucy in the Sky with Diamonds' gravely ill

AP, Jun 13, 2009 9:36 am PDT
They were childhood chums. Then they drifted apart, lost touch completely, and only renewed their friendship decades later, when illness struck.

Not so unusual, really.

Except she is Lucy Vodden — the girl who was the inspiration for theBeatles' 1967 psychedelic classic "Lucy in the Sky With Diamonds" — and he is Julian Lennon, the musician son of John Lennon.

They are linked together by something that happened more than 40 years ago when Julian brought home a drawing from school and told his father, "That's Lucy in the sky with diamonds."

Just the sort of cute phrase lots of 3- or 4-year-olds produce — but not many have a father like John Lennon, who used it as a springboard for a legendary song that became a centerpiece on the landmark album "Sgt. Pepper's Lonely Hearts Club Band."

"Julian got in touch with me out of the blue, when he heard how ill I was, and he said he wanted to do something for me," said the 46-year-old Vodden, who has lupus, a chronic disease where the immune system attacks the body's own tissue.

Lennon, who lives in France, sent his old friend flowers and vouchers she could use to buy plants at a local gardening center, since working in her garden is one of the few activities she is still occasionally well enough to enjoy. More importantly, he has offered her friendship and a connection to more carefree days. They communicate mostly by text message.

"I wasn't sure at first how to approach her. I wanted at least to get a note to her," Julian Lennon told The Associated Press. "Then I heard she had a great love of gardening, and I thought I'd help with something she's passionate about, and I love gardening too. I wanted to do something to put a smile on her face."

Vodden admits she enjoys her association with the song, but doesn't particularly care for it. Perhaps that's not surprising. It was thought by many at the time, including BBC executives who banned the song, that the classic was a paean to LSD because of the initials in the title. Plus, she and Julian were 4 years old in 1967, the "Summer of Love" when "Sgt. Pepper" was released to worldwide acclaim. She missed the psychedelic era to which the song is indelibly linked.

"I don't relate to the song, to that type of song," said Vodden, described as "the girl with kaleidoscope eyes" in the lyrics. "As a teenager, I made the mistake of telling a couple of friends at school that I was the Lucy in the song and they said, 'No, it's not you, my parents said it's about drugs.' And I didn't know what LSD was at the time, so I just kept it quiet, to myself."

There's no doubt the fanciful lyrics and swirling musical effects draw heavily on the LSD experiences that were shaping Lennon's artistic output at the time — although many of the musical flourishes were provided by producer George Martin, who was not a drug user.

"The imagery in the song is partly a reflection of John's drug experiences, and partly his love of `Alice in Wonderland,'" said Steve Turner, author of "A Hard Day's Write," a book that details the origins of every Beatles song. "At the time it came out, it seemed overtly psychedelic, it sounded like some kind of trip. It was completely new at the time. To me it is very evocative of the period."

Turner said his research, including interviews with Vodden and Julian Lennon, confirm that she is the Lucy in the song. He said it was common for John Lennon to "snatch songs out of thin air" based on a simple phrase he heard on TV or an item he read in the newspapers. In this case, Turner said, it was the phrase from Julian that triggered John's imagination.

Veteran music critic Fred Schruers said Julian Lennon's reaching out to help Vodden as she fights the disease is particularly moving because of the childlike nature of the song.

"It's enormously evocative but with a tinge of poignancy," he said. "It's the lost childhood Julian had with that little Lucy and the lost innocence we had with the psychedelic era, an innocence we really cherished until it was snatched away."

Vodden was diagnosed with lupus about five years ago after suffering other serious health problems. She has been struggling extreme fatigue, joint pain, and other ailments.

"She's not given up, she's a fighter, and she has her family backing her, that's a good thing," said Angie Davidson, campaign director for St. Thomas' Lupus Trust, which funds research. "We need more people like her, more Lucys."

Davidson, who also has the disease, said it affects each person differently, typically causing exhaustion and depression. When the disease kills, she said, it does so by attacking the body's internal organs.

It has become difficult for Vodden to go out — most of her trips are to the hospital — but recently she and her husband went to a bookstore and heard the song playing over the store's music system. When they went to another shop, the song was on there as well.

"That made me giggle," she said.

Saturday, September 19, 2009

FYI...

For my real life friends I've recently added & will add in the future, PLEASE realize this is my venting spot. I can say "Oh, it's just a flare and part of Lupus" when I talk to you on the phone or in person... but THIS is my place to let it all out.

So yes, I may use obscenities occasionally & maybe even be downright negative at times. But know "positive Erin" will be back & sometimes I just have to VENT!

:)

This public service announcement is over now :P Signing off.

Let's make 75% our goal...

And a LOT has happened since I was here last. It's been a crazy two months! We've been VERY busy. We've moved into a MUCH better place (THANK GOD because our old apartment had been outgrown years ago but medical expenses had kept us there anyway). Moving takes up a LOT of time & energy & I'm honestly still AMAZED that I made it through it all :)

I've been reminded over & over about something my last physical therapist June told me. I had said something about being overwhelmed & sad that I was realizing I'd never get to 100% again. She told me "Let's make %75 our goal, then you won't be so discouraged. Honestly 100% just isn't going to happen short of a miracle. And you know I do believe in them too, though!"

She was an AMAZING PT. Absolutely amazing. She pushed me, yet gently. And we just CONNECTED. I will ALWAYS have very fond memories of our sessions & the conversations we had too. I told a friend of mine that she was not only my physical therapist but my mental therapist as well. And that was completely accurate.

I still do the exercises she taught me (okay, not EVERY day - but as many as I can & remember to do so). She was logical about healing, which I'd never really been honestly. I'd never let myself even consider 100% wasn't the goal or give myself credit for the small progresses I WAS making.

The reason I quit seeing her had NOTHING to do with us being done with our sessions. It was because June had very serious tragedy touch her life in December. Her husband (who was the swim coach of the university team in our town) was diagnosed with an inoperable brain tumor. These people had all the best resources in the world at their fingertips with their connections, yet after traveling all over the globe the diagnosis remained the same & after Richard passed away in June. Ironic that his wife's name is June?

*sigh*

I miss her & I think of her often. Her words STILL inspire me. But when such stark tragedy strikes someone it paralyzes others. Why is it so hard to reach out to those who are in dire need? Why? I don't understand it, but I know it's the truth. I know it first hand because I've had many incidences where my friends & even family just could NOT even deal with the reality of me being sick. There were MONTHS where I didn't even hear from my own younger brother because he just could not grasp the idea of me having Lupus. And I thought about him every day. I took it personally for a while when I shouldn't have, but it's SO easy to become self absorbed when you are in the midst of an illness. I've learned this lesson & how not to do this now I'm happy to say.

The point of this blog is to say this... REACH OUT!!!! Don't be afraid of saying the wrong thing. Just BEING there, making that phone call, writing an email, sending that "thinking of you" card might be the thing that keeps your friend or loved one going that day. You can never know just how much difference that one small gesture can make, but I can promise you it's HUGE.

Keep on keepin' on, SURVIVORS :)

Wednesday, July 15, 2009

How do I keep finding myself here again & again?

My legs & arms are covered in bruises. Every time I think I can ride out the pain & not do this to myself again, it happens AGAIN.

*sigh*

Bruising easily is part of Lupus. I've had that symptom for as long as I can remember & probably before. Nerve pain is also part of Lupus.

Put the two together & once I push on a spot that is hurting too much to ignore (acu-pressure style), I get bruises that look like spots. Right now they are ALL over my legs. And my arms. It's NEVER been this bad. It makes me sick to look at the bruises honestly :(

I'm pretty sure my current rheumatologist is an idiot. I don't think she's a bad person or anything, but taking me off pain medications & expecting me to be a contributing member or society is just not going to happen. "Take Tylenol Arthritis. Being on pain medications at your age is too risky."

How did my age become a factor in this??? Has anyone else been fed this bullshit???

I'm finding it's one or the other. Either I take pain medications & can get up & do the things that needed to be done days ago, or I don't take them & I make myself look like a bruised up leopard & can't do shit.

My hands wouldn't work well enough to type for a few days. That's why you haven't heard from me on here. They have been drawn up in pain & arthritic deep aching. The same aching pain I feel from head to toe. I swear sometimes it hurts so deep that it feels like my bones are rotting.

Someone tell me how to get past this. Tell me how to DEAL. How to FUNCTION. How to FREE myself of this pain...

And if you can't do that, tell me my doctor is an idiot. Help me realize I deserve to have my pain level managed using medications & that it's OKAY to do so. She sure has gotten me on every other medication she can get kickbacks from. What's so wrong about pain meds? I just don't understand why this has to be such a FIGHT & why I should have to feel GUILTY for wanting medications to help.

I'm just SO tired.

Tuesday, July 7, 2009

Sad but true...

My copy of The Lupus Book arrived today. I'm already flipping through & starting to read it. I'll make an update of the things worth sharing, but already it seems like something everyone with Lupus should have!

Also, today I don't have the energy to take a shower. Seriously. I feel weird & unfocused & dizzy & weak. Did I mention they are tapering me off my predisone? I thought I hated steroids, but coming off them SUCKS even worse & I'm thinking I felt better BEFORE. Uggh. I'm ready to have a doctor who knows about Lupus. Specializes in it. Eats, sleeps & breathes it & can make me feel better & make my life easier & who doesn't jerk me around.

I have an appiontment with a new rheumatologist in Atlanta at the end of August that I think may finally be this doctor. But man, waiting months @ a time to get in with a doctor is total crap. Don't you agree? It made me SO mad when I first started going through this all. But I've found since then that the good doctors are worth waiting for. Usually.

I have already heard this doctor speak before & she was fabulous & I learned so much. So I called & made an appointment as a new patient the very next office day. Hopefully The Lupus Book can get me through until I see her & help me know what to talk to her about & what the important things to mention are.

Well, I'm going to get out the apartment for a bit. I'm feeling a bit of cabin fever. So yes, I will leave the house unshowered. It's either shower or get out of the house. My spoons are running low today & I choose to use them to go visit a friend & her daughter :)

Sunday, July 5, 2009

Thunder storms...

Whenever it rains & rains, I hurt more & more. Aches all the way to the bone. Uggh, make it stop.