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Posted: 12.15.2002
Without love, it ain't much
I've noticed a few jabs taken here at there in my comments recently regarding my health and the fact I receive disability. Just to help burst the illusion-bubble, I'm not sitting here getting rich off the government for nothing folks. In fact, I earn a whopping $4860/year (yes, that's per year) -- 80% of which ($3888) is considered taxable income. So not only did I pay taxes from the age of 15-24 to earn what I do, I also pay taxes on what I bring in now. Of course that's in addition to my husband also paying taxes on his income. He pays more in taxes to FICA on his income each year than I earn in SSDI benefits. So if you think we're spending "your" hard-earned tax money -- just remember that he pays in more than I take out, and we're taxed on what I do get.

I'm not telling you any of this because it's really any of your business. Only my husband, my doctor, my attorney, and the Social Security office have that right to know. But perhaps it will make just one of you think before you speak in the future -- be it to me, or someone else out there.

Does anyone really believe the life of a disabled person is glamorous? Well then you try leaving a career of $30K/year or more, and figure out how to make ends meet on less than 1/6th of that. You know how soaps and Oprah get old after you've been home sick for a few days? Try it after a few years.

The photos you see of me are the ones I let you see. Don't ever think otherwise. I'm not always well-dressed with my hair and make-up done. My copyright tagline isn't a complete joke. In fact, I'm lucky if I have the strength to do my hair and make-up once a week. My mom is still yelling for a Christmas photograph of the two of us. I'm just not able to take one right now. During long-weekenders (like my birthday or Todd's birthday), I rest up beforehand and do absolutely nothing for at least a full week afterwards. Sometimes that even includes showering. I don't have the energy to remain upright that long. If I can't manage a bath, I get a washcloth-bath instead. And I don't mean that sexually...because that's the absolute last thing I have the strength for during times like that. But just because I'm sick, does that mean I'm not allowed the right to have fun and enjoy others' company when I'm able? Especially on our birthdays...

Since everyone left on the December 3rd, I've left the house exactly three times. And one of those times I was in my PJs, since we didn't exit the car for two of those trips. I do well to cook two meals per week. Todd takes care of the majority of the housekeeping because it's worth it to him to have my company when he pitches in, rather than have me in bed for two days because the kitchen got cleaned. The one thing I can still do on a regular basis is type and spend time on my PC and laptops. So that's what you "see". Of course, you don't see the heating pads and Thermacare wraps it takes to keep me here either. Or the Darvocet as an absolute last resort...

I don't blog about the times I puke for days on end. Or the rough patches that Immodium AD wouldn't have a prayer of covering up. You don't hear about the Lyme-related rashes. Or the near-fainting spells. Or the headaches and the muscle/joint pain. Sure those are constantly there -- it just doesn't make for good blogging. I've said it before and I'll say it again... When most people ask "how are you doing?", they want to hear "fine fine just fine" in return. Unless it's a big event like an emergency room trip -- there's really no point in giving same song, different verse each day. It's a part of life I've learned to deal with and make the best of it. That doesn't mean it's not happening. It just means if I'm feeling so bad that I won't even discuss it with my husband, I certainly don't want to talk about it with you.

On top of it all, I have terrible insomnia. It may seem like a luxury to some that I can stay up 'til five a.m. and sleep 'til one p.m. But it's not much of a luxury the times you require so much medication to get you there that it doesn't wear off once you're awake. Or the times you still have to sleep in 2-3 hour shifts for days anyway. Then the first few hours of your day are spent in an absolute fog...

Imagine the worst flu you've ever had. The fevers. The aches and pains. The lethargy. Now imagine that never, ever going away. I've been there since 1996 -- and that's considered a "good" day for me. I've learned how to cope and function while living like that because I have no other choice. The "bad" days are when I get strep, or the actual flu, or bladder/kidney infections on top of it all. Because when I catch one thing (and I have very little immunity to fight things off), I catch everything for weeks afterwards like a domino effect. I can't even get vaccinated because it will actually give me the illness it's trying to prevent. I'm also allergic to most new medications that I try. I just have to roll the dice and hope for the best. Sometimes the side-effects just drag me down. Sometimes they result in a week-plus hospital stay, as was the case just a few weeks after we got married.

I also haven't been able to drive more than a handful of (less-than-10-block) trips since 1996 -- and Todd was with me for each of these. Now stop a second and think about that. In 1996, "Jerry Maguire", "Twister", the original "Scream", "The English Patient", "Fargo", "Independence Day" and "The Cable Guy" were released. The Spice Girls were just starting to hit it big. Princess Diana was still alive. That was the last time I was behind the wheel by myself. I quit driving because one day I was coming home, and as I pulled in the driveway I couldn't remember which pedal was the gas and which was the brake -- so I hit both at the same time and prayed. We lived in a neighborhood with several small children, and all I could think of was, "What if that had been a child, and not my house, in front of me?" I also was getting lost during mini-trips in a town I'd lived in over four years. That was it. A lot of times you'll hear me joke about being blonde. It's just easier that way. But the real reason is because most days I battle what the CFS and Lyme communities call "brain fog". It's just a lot more humorous to blame it on hair color instead. I don't have the mental clarity it takes to be behind the wheel and I know this. I rarely talk on the telephone for the very same reason.

I'm fortunate enough to have had a very easy spring and summer this year. Rather than getting out once a month, for a long-stretch I was able to get out once a weekend. I just never mentioned that I was only getting out on weekends during that time. The photos you saw? That was it. The rest of the time in between was spent on the couch or in bed. Some bloggers choose to tell you how they're feeling each day. That's their choice. Mine is to just keep it myself. Maybe part of other's perceptions is my own fault because of that. If you're not our friend in real life, you don't always know about the events we really wanted to attend but had to cancel on. It's defeating to admit it to myself -- much less everyone around me.

I'm not telling you any of this because I want your sympathy or pity -- and especially your medical advice. Quite the contrary. I'm telling you this in hopes you'll stop and think for a second. When you peek in on my life, you are seeing the picture I choose to paint. Not a still-photograph. But sometime I invite you to come spend a week with me and look in my eyes on day five if you have any doubt. I've been told if you do, you never have to question just what I can -- and can't -- do ever again.

I don't have it bad, and I won't claim that I do. My illness isn't terminal, and many others face much worse from day-to-day. I have a happy marriage, and I'd much rather be where I am with him -- than feeling well every day without him. I count my blessings often. In the future, perhaps you should stop to count yours, too -- rather than pointing your fingers elsewhere. I'll gladly trade you incomes otherwise!



Hey boy take a look at me...let me dirty up your mind...



Oh Robyn...I'm so sorry you felt the need to have to put that out there. You are truly blessed with the love you have with Todd and the friends that care about you so much. To those who give you a hard time....they can just fuck off...

¤ ¤ credit: daisy | 12.15.02 at 05:57 PM | link--this ¤ ¤

Thanks! I really think it was time though. I can see, even if it's none of their damn business, where others could get the impression they have. But again, if they think I have it so great, I'll gladly trade them incomes! ;-)

¤ ¤ credit: robyn | 12.15.02 at 06:00 PM | link--this ¤ ¤

You are such a vibrant, strong, compassionate woman, Robyn. I'm lucky that I know you and the friendship and love you offer. And I feel sorry for anybody who can't see how strong you have to stay just to be. To those people - I pray you never have to experience the things Robyn goes through. Instead of making jabs, I really hope this makes you think about things. She's stronger than you think, and she just proved it, by opening her soul and life up.

¤ ¤ credit: Annessa | 12.15.02 at 06:03 PM | link--this ¤ ¤

Hon, as someone who just ended her "glorious reign" on Disability, I understand 100% that you're not getting rich off the government.

Don't explain things to your detractors. They don't care. They're just mean, vindictive, nasty little miscreants without anything better to do than try to take down The Queen of the blogosphere.

I wish you better days and wonderful moments with your family and friends. If ya ever need to bitch about the aches and pains...I'm available. I understand and will provide you a confidential ear/shoulder.

Just keep on being Robyn and enjoying the things you can.

Smooches and hugs, Joanie

¤ ¤ credit: Da Goddess | 12.15.02 at 06:06 PM | link--this ¤ ¤

Hey baby, I put my picture up for you - http://www.mistermittens.com/archives/000067.html now come and see my pussy!

[Mister Mittens One furry pussy]

¤ ¤ credit: Mister Mittens | 12.15.02 at 06:08 PM | link--this ¤ ¤

Though it's a shame that people would take jabs at something as personal as your health, I'm glad you wrote this respoonse. Maybe it will serve as a reminder to everyone that no one can know everything about us by reading our websites. We control the content, and readers see what we allow them to see, nothing more.

¤ ¤ credit: Brandy W. | 12.15.02 at 06:22 PM | link--this ¤ ¤

Who has been making jabs at you about this???? Can I please go and throw my fuzzy slippers at them??? That really pisses me off. :(

Robyn, I know I've said this before, but you really are inspiring to me. I've noticed that you've been a bit better than when we were first talking about our health, and that gives me hope that maybe I'll be at that point again. It sucks when people say "oh, yeah, I know how it feels to be tired." Oh yeah, freakazoid, sure ya do -- come to my house and see. But I think I might be closer to understanding...

If I ever get a diagnosis, I'd really like to file for disability, too -- but you are so strong to have gone through the whole process to get it, and the processes you have to to keep it! Just reading about the years and money it takes to get it makes my head spin! It is really hard to go from a 2 income home to a 1 income home, and poor E works full time++++ and then comes home and does most of the chores.

It scared me so much this week in the book I was reading to hear that 75% of patients with a chronic illness get divorced. But then I sat there thinking, and I had two thoughts - 1) E loves me. and 2) You and Todd have made it through years of this, and the way you two talk about each other makes me know that its for love, not just obligation. Really truly, I felt better after that. Because despite the stupid odds, this illness isn't gonna bring me down (at least not further than the bed ;) )!

If you need someone to whine to or just some big virtual hugs, I'm always here for ya - i love ya, chica, and I'm so blessed to call you my friend.

¤ ¤ credit: kristine | 12.15.02 at 06:27 PM | link--this ¤ ¤

Thanks for the tough sharing. It's too bad we have so many morons in the world (and in the blogosphere) that compelled you to post this. I always consider it a vicarious thrill when a blogger wants to share personal stuff, but I don't expect it and I certainly am not ripping on anyone else's habits. I often wonder how my wife of 24 years has put up with me. Sounds like you certainly have found a soul-mate in Todd. (lucky guy!)

¤ ¤ credit: Bill | 12.15.02 at 06:29 PM | link--this ¤ ¤

*hugs* Robyn. You're and angel. And *hugs* for Todd too, he sounds like a Saint.

¤ ¤ credit: AntGrad | 12.15.02 at 06:44 PM | link--this ¤ ¤

I'm sure the snarky ones are just jealous of your vibrance, your strong friendships, and depth of caring. Whether you only put out part of yourself on "display" or not, you are an amazing woman.

You may have to "save up" for a week, to have a great weekend, but when you do... you do it in style! ;)

I'm sorry if people see it wise to poke and jab at you, but it was interesting to see a bit more into your life... to see the real Robyn. It's hard to put it all out there, since most people just prefer surface talk, but those of you that consider you a "friend" like to learn more about you. :)

¤ ¤ credit: GeekGrrl | 12.15.02 at 07:10 PM | link--this ¤ ¤

Robyn, you continue to surprise and impress me with your fearlessness.

¤ ¤ credit: Donna | 12.15.02 at 08:05 PM | link--this ¤ ¤

I have what Robyn has too, that's how we met. Anyone hassling her for being on disability had better line up for an ass-kicking from me.

¤ ¤ credit: Jessica | 12.15.02 at 08:18 PM | link--this ¤ ¤

And you guys really just have no idea how strong she is, either. There are days where she'll even keep how sick she is from me so she can get out of the house, spend time with me, or do something that I wanted to do, just to do something nice for me.

You constantly amaze me babe. You make me a better person just by being married to me. I love you.

¤ ¤ credit: dick | 12.15.02 at 08:24 PM | link--this ¤ ¤

silly girl. fuck anybody that feels the need to knock down your strength. they don't deserve the attention of your rebuttal. i think of how much my joints hurt when the weather changes, and i think of you and cringe. i remember when you mentioned parking in handicapped spots, and it makes me even more mad when i see anyone without a tag in your spot.

todd doesn't just love you. he worships the ground you walk on. and as jealous of that as i am, you deserve it. keep fighting, and one day they'll fix you up, tough girl.

¤ ¤ credit: tanya | 12.15.02 at 08:25 PM | link--this ¤ ¤

I really took your entry today on your health to heart.
I remember when you wrote this. I had always respected that entry, and it changed my perspective on something I thought I knew about.

Maybe you should share some of these health concerns now and then. It allows us to see the bigger picture, to understand you more. That can be inspiring to many.

I've been reading your site for at least year; you're someone I have never met, and who knows, maybe never will, and yet, I have great respect for you. Look at your blog stats. So does everybody else. You don't owe anyone shite.

And remember, 10 or 20 out of 100,000 hits/month BY LAW have to be assholes.

In other words: "Fuck 'em."

¤ ¤ credit: Quinn | 12.15.02 at 08:27 PM | link--this ¤ ¤

um. see?

such a good boy, that one. *sniffle*

¤ ¤ credit: tanya | 12.15.02 at 08:28 PM | link--this ¤ ¤

Robyn, until this entry I never new the entire story. I had seen some things related to your health here and there, but never the whole picture.

I sit here with tears as I realize how hard it has to be for you. I haven't been where you are or what you have had to deal with, but, I can tell you that I'm sorry you have to live this way every day.

*gentle hugs* for strength, girl. You are stronger inside than you realize and for that I'm glad. You have a huge heart and a wonderful hubby. :)

¤ ¤ credit: Simply Sara | 12.15.02 at 08:57 PM | link--this ¤ ¤

Robyn,
I can't say much more in the way of kudos than everybody else has already said.
It takes big cajones to post the deeply personal things you did.
Quinn is right, about the detractors - "Fuck em".
Todd is the lucky one here.

¤ ¤ credit: Greg | 12.15.02 at 09:04 PM | link--this ¤ ¤

Robyn.
You inspire me. Your blog is the first one I go and read every day. I aspire to make my posts as interesting and fun as yours. I didn't know that you were sick. Knowing that now makes me even more in awe of you. Thank you for inviting me into your life. Ruth

¤ ¤ credit: Ruthie | 12.15.02 at 09:31 PM | link--this ¤ ¤

You are an amazing woman. When I first started reading blogs, yours and Gretchen's were the first I'd found. Not understanding much about blogging at that point, I went through both of your sites to learn more about you. I visited the sites you created too. (Now I sound like a stalker :p ) I read about your health issues too. I find that every day I am just wowed by how productive, loving, joy-filled your life is even though your body doesn't cooperate with you as it should.

Anyway, you are an inspiration to me. As what a good friend should be. As what a happy, healthy relationship should be like. As what a good person is.

You are an amazing woman. Had to say it twice.

¤ ¤ credit: anotherLisa | 12.15.02 at 09:52 PM | link--this ¤ ¤

So, money bags, now that I know you have a hot government salary, I'll expect you to pick up the tab for our next get-together, right?

¤ ¤ credit: Solonor | 12.15.02 at 10:37 PM | link--this ¤ ¤

I know you didn't post the above to get sympathy or pity. Frankly, you won't be getting either from me. What I do have for you is an increased admiration. A lot of people would probably fold if they had to deal with only half of what you've described. What you are is a strong and admirable woman. What you and Todd are is a perfect example of love unconditional. The world would be a better place if it had more people like you both.

¤ ¤ credit: Geri | 12.15.02 at 10:46 PM | link--this ¤ ¤

There's nothing I can say that hasn't already been said. You already know that I think you're amazing and that you and Todd are always in my prayers.

You go, girl.

¤ ¤ credit: Cheryl | 12.15.02 at 10:46 PM | link--this ¤ ¤

I'm such a little lurker at your site Miss Robyn, So first off thank you for the time you do take out of some pretty painfilled days to share your beauty on this slice of the web. And a hearty dose of anal leakage to the small minded, ignoramus who felt the need to spread some hate on you. My prayer for you is that God would send 100% healing your way, and if it doesn't come right away may you still believe that it is on the way and enjoy it's goodness when it finally comes.
Peas

¤ ¤ credit: Matthew | 12.15.02 at 11:16 PM | link--this ¤ ¤

I'm a quiet watcher too - and it goes to show that a great web page and a few graphics doesn't always show the inside of a person. Thank you Robyn for sharing this with us. You remind us to be thankful for the things we have and not what we should be griefing for. If only I could show this entry to my co-workers who refused to work today... and show them that there are people who would glady take their spot if they could and work the hours... thanks again Robyn.

¤ ¤ credit: susan | 12.15.02 at 11:55 PM | link--this ¤ ¤

I just wanted to say I'm thinking of you, girliepoo. Let me know if ever there is anything to do to help you out. You so rock. :)

¤ ¤ credit: Kymberlie R. McGuire | 12.15.02 at 11:58 PM | link--this ¤ ¤

Just wanted to take a few to thank everyone who's replied with notes of support and encouragement. Although I certainly didn't write this with the intention of "tell me how great I am", knowing so many people care humbles me more than you can possibly know. I am very blessed! Thank you!

¤ ¤ credit: robyn | 12.16.02 at 12:04 AM | link--this ¤ ¤

I knew about a lot of your illness, Robyn. But as I type this, there are tears in my eyes, not only because you gave us a good look at what your life is REALLY like...but also because of all the things that others have said.

Despite it all, you have done so much with your life so far, and have made so many people happy. You don't sit around in your underwear all day whining about how horrible your life is. It is no surprise to me that a lot of people didn't even know that you are sick!

As for whatever loser-fuck is dissing you...fuck 'em. I speak for many when I say that I love you just as you are...and respect you for making it through those many difficult days.

Finally, it seems to be a rare thing these days when a spouse actually sticks with the *for better or for worse, in sickness and in health* part of the wedding vows. Todd is definitely in it for the long haul. You are so lucky to have him, and he is just as lucky to have you!

Drink a toast the to wonderful life that is yours and Todd's! Anyone who doesn't like it can go to hell!

¤ ¤ credit: Christine with an M. | 12.16.02 at 12:15 AM | link--this ¤ ¤

Thanks, for sharing your life with us. I admire you for being strong enough to crack me up daily!

I'm sorry you had to break it down for some selfish people.

¤ ¤ credit: donna | 12.16.02 at 01:37 AM | link--this ¤ ¤

this is why people who are ignorant and yet open the mouths and speak about that which they don't know, really anger me to the core of my soul.

you are such a beautiful woman with a heart of an angel. i just wish i could take away the suffering you go through, but since i can't, i offer you my friendship and love.

oh...and i offer you one more thing. if another ignorant asshole mutha fucka opens their ignorant mouth, yo' internet ho sistah gots yo' back and i will regulate! ayite?

i love you

¤ ¤ credit: yvonne | 12.16.02 at 02:33 AM | link--this ¤ ¤

My sister has ulcerative colitis, and if you were to meet her, you would think she was perfectly healthy.

Because, if you were to meet her, it would be a good day. Very very few people know what the bad days are like.

¤ ¤ credit: Gert | 12.16.02 at 03:38 AM | link--this ¤ ¤

A little insight into why Robyn doesn't want to chat about being sick very much - there's only so much talking you can do. When both Robyn & I first got sick, we were in support groups and chat rooms constantly, chatting to others who are sick, and there's only so much of that you can do.

There comes a time when you have to remove yourself from the 'sick world' and try to live as best you can in the normal one where people talk about things other than aching joints, dizzi spells and the hundreds of other symptoms that come with CFS & Lyme (and in my case, my nasty bug is Rickettsia).

You don't need to be reminded constantly that you're sick. It happens often enough as it is, so I can so totally understand why she doesn't mention it on here much. I don't blog much about CFS either. BTW, I'll be back on my own blog - bloganon.com in a couple more days.

¤ ¤ credit: Jessica | 12.16.02 at 05:00 AM | link--this ¤ ¤

<sarcasm>
So you're the one all my hard earned money has been going to. I bet you really drive a new mercedes and sit at home watching your new 50" plasma flat panel TV. You probably even live in a mansion the size of some medieval castle.

We need to focus on "the little guy" ... the one that pulls down hundreds of thousands per year by being on disability. They're the real problem ... not the huge corporations leeching millions in corporate welfare ... no.
</sarcasm>

¤ ¤ credit: tj | 12.16.02 at 08:04 AM | link--this ¤ ¤

I'm so sorry that some asshole said/did something to make you feel the need to post this.

Two years, 4 months and 29 days ago (while living in California) I got hurt really bad at work (I managed a store front loan company and fell off a VERY high ladder changing a lightbulb). I blew out two discs in my neck and tore up my L shoulder. I'm left handed. I take more meds each day (morphine, znanflex,neurontin, doxepin) than any person ever should have to do. I try not to take my daytime doses many times so that I can function, then end up in so much pain later that night, that I may go 36 hours without sleeping until the pain subsides enough so that I can even lay down. It's awful, so many days. My husband and I had been married less than a year when this happened, so we lost my $40,000 a year job but I still receive unemployment benefits and will receive a large settlement when this is all done... then I face disability for the rest of my life.

My husband makes good money, so we are lucky in that respect but most often, he comes home and cooks and cleans for our kids (my two and his one from previous marriages.. we have custody of all three) so then I get to feel the guilt on top of the pain. The guilt motivates me to get up and try to do things, then I end up in bed for a week for trying.

I SO understand what you are saying, though each of us is unique in their pain. Sometimes I blog about it, but most days I just say I had a bad day or night and don't elaborate. Sometimes, it's embarassing to talk about what's going on. People think you're a pill popper, complainer... whatever. I just want you to know that I understand (even though you have no clue who I am...lol) and that I hope things go well for you. YOu're very lucky, as am I, to have a wonderful husband. Merry Christmas!!

¤ ¤ credit: Kristi | 12.16.02 at 09:01 AM | link--this ¤ ¤

I squeesh you.
And iffen I ever get down to Florida, I'll clean your kitchen for you so you can hot tub with me - hell, the consort's mother has me doing her bathrooms when I go to Halifax (Okay, I volunteered, she has hypothyroid), and I don't even get to get nekkid at the end. :D

¤ ¤ credit: Bill | 12.16.02 at 09:53 AM | link--this ¤ ¤

Uhm..
I know of what you go through, sorta.
Watching my dad deal with Fibromyalgia and Multiple Sclerosis has been...horrifying to say the least.

I totally understand the good day/bad day thing. I understand the struggle for motivation. Don't get me wrong, I am not saying I know how you feel, because I don't. But I understand.

Screw the asshats who feel the need to spout off about something they know NOTHING about. I wish things were easier for you and Todd. Lord knows if anyone deserves it, it is you.

I hope the Holidays are wonderful for you both!!!

¤ ¤ credit: Jen | 12.16.02 at 10:18 AM | link--this ¤ ¤

heh. This entry and the linked entries have been quite an eye-opener for me, m'dear, and I sympathize. My own one-and-only has phenylketonuria and (usually) migraines, and while it is not disabling, it is certainly impairing, has to be dealt with daily, and makes every trip to a new doctor an Adventure. Me, I just try to be there, and hopefully I do as good as your own dear hubby does.

But in any case, thanks for the rant, and know that I'll be thinking of you the next time I see someone with a DP placard who doesn't `look disabled'. (Unless it's a UCLA football player of course--I imagine you heard about that disgrace.)

--Luis

¤ ¤ credit: Luis Felipe Morales | 12.16.02 at 11:49 AM | link--this ¤ ¤

Ok, guys and gals. Thanks for being there for Robyn. She also didn't mention the 70th birthday party for her grandmother that she had strep throat for, or the last Christmas she got to come home for when Todd carried her out of the house crying because she was so sick and needed to go back to bed (after only about 2 hours), or the prom she only got to enjoy for 2 hours in high school, or the many dates she missed and girl's nites in high school when she stayed home in bed and her girlfriend Kathy would come over and tell her all about it so she could keep up with her friends (thanks Kathy), or the time the teacher gave her a B instead of the A she earned because she missed so much class and so he lowered her grade (she had doctor's notes excusing her due to illness), or the professor in college that riduculed her in class for being late and said she was probably just out partying when in reality she had spent the nite in the emergency room and STILL made it to class. Of course there's her SAT tests for college entry that she took running a 102 fever. These are a few of the things she's missed that I remember.

Robyn, ignore the few ignorant people that try to put you down. They are to be pitied for their ignorance and stupidity, hopefully you educated them so they can overcome THEIR problem. Don't let them make it yours. THEY are the one with the problem, not you.

I love you sweetheart.

¤ ¤ credit: Robyn's Mama | 12.16.02 at 12:09 PM | link--this ¤ ¤

I wasn't going to post anything, because I rarely talk about my health or my life, but i just wanted to say you're not alone.

I have CFS, Insomnia, PCOS, Guillain-Barre Syndrome. I'm on so many drugs you'd think I was an elderly person. Although i'm not collecting disability, being not American, plus the fact that it just wouldn't be worth it, the paperwork is ridiculous, it's like you're signing your life away. I'm not always in pain though. More tired than anything.

I had to quit medical school because of it. I had to do something less stressful. So I got my MBA instead. The problem is-is that now I can't work at all. I have to work from home. I'm tired all the freakin' time, yet i'm up all night, it's a never-ending cycle.

Dave is the one that does everything in the house. Cleaning the kitchen wears me the hell out, but I do as much as possible. The scary thing is that my kids (and it was a miracle that I had those, after 5 surgeries) don't understand. Some days are MUCH better than others, in fact I went a whole week being fine, it was like I had a whole new life, but the next week was pure hell for me. I can't go out of the house for long periods of time, but I do, and have done it for myself, for Dave, for my kids. I get panic attacks when I go out because I panic that i'm going to have one. Like I said a never-ending cycle.

I'm sorry you had to explain yourself to those fucktards. People will never understans what a person goes through until they've been in your shoes. I say fuck 'em all. I still think you're a great person and so many others do as well =)


¤ ¤ credit: Dania | 12.16.02 at 04:20 PM | link--this ¤ ¤

I meant PLDS, not GBS...I swear to god i'm losing it.

¤ ¤ credit: Dania | 12.16.02 at 04:28 PM | link--this ¤ ¤

Wow, Robyn. Reading this gave new meaning to your recent comment on my blog, "Can you bottle some of your energy?" I know I'd asked you questions about your health before but not until this entry did I have quite a picture of what you go through.

And with that, can I just reiterate what so many have said, is that you're amazing! (Wow, now that it sounds like I'm a professional ass-kisser...) You have a great spirit that rarely seems to be "down," and you're ready to go at a moment's notice for a battle of wits... and I never sense any brain fog when you're going toe-to-toe with idiots. ;)

And with Todd and your mother's postings, I can see what gives you the strength on both your good and bad days: friends, family, and a husband who are amazing people themselves and know exactly what the concepts of love and support mean!

*hugs* Now would you quit writing stuff that makes me cry, already??

¤ ¤ credit: Gretchen | 12.16.02 at 05:19 PM | link--this ¤ ¤

Robyn, You are precious. You can take comfort in knowing that the people who care about you far outnumber those that would criticize you while not even knowing what they're talking about. Take care and {{{hugs}}}...

¤ ¤ credit: Marie | 12.16.02 at 07:01 PM | link--this ¤ ¤

Thanks for sharing your story. My wife suffers from Fibromyalgia, so I know all about the aches and pains and good days and bad!

Keep strong!

¤ ¤ credit: LTLFTC | 12.16.02 at 07:29 PM | link--this ¤ ¤

(Let's see if I can dredge up my old memories of Interpersonal Communication class back in college...)

Self-disclosure is one of those stages of the development of a relationship -- since it indicates some degree of trust from the disclosor toward the recipient.

Your readers should realize what belief you've shown in their value by your choice to disclose some of the things you would prefer to keep to yourself. Since a blog is not really a broadcast, but a series of infinite tete-a-tetes, we'll have to see how this gets worked out by the sociologists -- but, in the meantime, thanks for your trust in all of us.

¤ ¤ credit: Michael | 12.17.02 at 01:33 AM | link--this ¤ ¤

I have deleted more than five things because I don't know what to say. This does not do it either, but hang in there. People love you, and you kick ass.

¤ ¤ credit: Hicory Dickory | 12.17.02 at 03:50 AM | link--this ¤ ¤

My admiration for you grows and grows. From this seat, what I see is a woman loving life to the fullest, having as much fun as she can and taking time to play. That's the strength I aspire to. To laugh, no matter what. *hugs*

¤ ¤ credit: Robin | 12.17.02 at 06:56 AM | link--this ¤ ¤

Robyn, I know what you mean. I have a friend going through the same thing. To the outside world she is healthy and happy. Because like you, that is the IMAGE she projects. She's out and about in our town late at night because it's the only time she feels comfortable being out. She knows where all the open all night or open til 3AM restaurants are in our city.

She too gets glares and stares when she ventures out to do shopping, which is rarely. She's online a lot because you can be in bed and be on the computer. Lots of folks don't realize that.

As another commenter said, it's sad that you have to explain yourself to other people; it's all about appearances, isn't it. A perfectly healthy person could go to Walgreens and buy a $5 crutch and get more sympathy than you or my friend could in the throes of one of their worst days. (Just to tell you, she suffers from Epstein-Barr and CFS.)

Take care and have a happy holiday!

¤ ¤ credit: joni | 12.19.02 at 10:46 AM | link--this ¤ ¤




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