Saturday, November 14, 2009

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


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


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?


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.


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.

Thursday, July 2, 2009

The Lupus Book

I just ordered this from Amazon. I heard about it at the New Patients Seminar I went to about a month ago in Atlanta held by the Lupus Foundation of America. They keynote speaker was the one who said everyone with Lupus should have this book & that it is the Lupus Bible.

I'm sure I'll let y'all know what I think as I read through it once I get it. But if you have Lupus, you should get one too!

Talk about a bad way to start a day...

You shouldn't even really call it the start of a day when a headache awakes you at 4am should you? This used to be something that happened to me quite often just a few months back, but until this morning it hadn't happened in a quite a while. I guess I was overdue?

It's 11:30 now & I am finally able to slightly concentrate enough to write this. It felt like my entire skull was covered in a web of extremely painful frayed nerves. Digging my fingers in & massaging until I found the trigger points that hurt so badly & taking pain medication until I could finally fall back to sleep could only put a dent in the pain. Sleep is elusive & much desired when I get these headaches as it's the only thing that helps. I have to sleep away the pain. That's just how it goes.

Then I'm left with a foggy brain & half my day is gone before I've even started it. Nobody ever said having Lupus was fun, but does it really have to include these terrible headaches? Not to mention when they happen I get scared. It's scary that you are never really "in the clear" with Lupus. It's always lurking.

Six months ago I had a period of "irretractable headaches" occur (meaning they didn't go away for days @ a time). It was literally using up every last ounce of strength I had. A few doctors diagnosed me as having "pseudo tumor cerebri". Which means you have all the signs & symptoms of a brain tumor, but no brain tumor. I mean obviously I was glad to find out I didn't have one after all, but that whole ordeal is a scare I'll never forget.

I was @ the eye doctor because I thought I needed glasses because of all the weird things going on with my vision (that I had mentioned to all the doctors I had @ this point & they had done nothing about mind you - so I didn't think it was anything to worry about right?) . Well, during my appointment I came to realize very fast that seeing double was NOT normal. And that my vision going out in the shower like it had the other day was DEFINITELY not normal.

Well, DUH! You think?

But nobody had listened to me - the patient. I mean, why would you want to listen to the patient? They don't know anything about their own bodies! The way I was treated made me feel CRAZY & I even started doubting myself. This is not a good feeling to have when the next thing you know the optomotrist is calling the hospital and telling them they are sending you straight there to get a brain scan. Apparantly both of my optic nerves were very swollen (they actually still are - but it decreases & increases every time they take new pictures of the inside of my eye) & that this was cause for alarm.

That was scary. I've never been so scared in my life honesty. And my eyes were dilated as we left the eye doctor so the entire experience of being rushed back through the ER & into the freezing cold room where they did the scans was literally a blur. It all seems like a bad dream now honestly. The only thing I remember semi-clearly is being wheeled into the CT scan room & there being a huge rainbow sticker on the front of the machine. Before too long the ER doc on duty came in & said "Well, it's not a brain tumor!" I swear I had to stifle the urge not to say it like Swartzeneger.

I mean, where can you go but up from there, though???

And the positive thing to come out of all of that was having doctors finally take me seriously & realize SOMETHING was TRUELY wrong. It's sad that had to happen for me to be taken seriously, though.

Over the next month I was shuffled in & out of every type of doctor's office you can imagine, recommended for surgeries I chose not to have (more on that later), had more vials of blood drawn than should be legal & was stamped with a Lupus diagnosis.

It wasn't all that simple, but I'll save more for later. My hands are growing tired & achy & my mind is getting foggy. It's time to rest them both for a while.

A link for the caregivers among us...

Being diagnosed with Lupus could have been much worse without the patience & love of my personal advocate & husband Chris. I know it can be exhausting & tough to keep a good attitude when you can't make our pain go away, but just being there helps our emotional pain subside :) This link is for all the caregivers out there. Along with a BIG thank you, too :)

Tuesday, June 30, 2009


I've blogged for many years on another site and honestly I've fallen in love with it. I have not liked what my personal blog has become over the past few years since I got sick, though.

Thus why I am here. I want to create a place where Lupus patients & people with other chronic illnesses & last but definitely not least the people that support us can come together & support eachother & not feel judged or like they are complaining or whining. I want a place that is free of the guilt that come along with having a chronic illness or caring for someone who does. A place that is free of judgement. Is it even possible?

It seems a lofty goal, but I need a space like that as much as anyone. And I figure if I can help someone else along the way, all the better. So, here I am starting this blog about what life is really like for me. The good, the bad & the ugly side of Lupus.

Thank you for stopping by & I hope you will join me :)