Wednesday, November 02, 2005

1:17 AM

So that's when it was. This morning. That is when I decided to stop loving him. That's when I decided to stop holding on to the microscopic thread of a chance that it will work. That's when I said "I'm not going to love you anymore" and he had nothing to say. It was pathetic that I had to ask him specifically to tell me that it will 100% positively never happen. He has told me different things over the last 6 months. Maybe if we run into each other in the future and have a chance to date again, maybe then it could work. Or "maybe once we are both living in California and can give it another go, maybe then it will work." He never told me NOT to move on. But those comments gave me hope that maybe he was right. Maybe if all those crazy circumstances come together, it WILL work.

But now I know. And this "MAYBE" shit aint happenin'.

He said "I don't want to be with you. I don't want to be with anyone. I prefer to be alone. I don't want to see if things will work between us. I have no interest in changing. I don't want to give up being selfish. I don't ever want to care for anyone else but myself. It's just easier this way. So, yes, you need to move on to someone else."


Then, "You should know that I never lied to you. I never cheated on you. You will always believe that I lied the entire time we were together, but I never did. Look, Jyn, I got tired. It got too hard and became obvious that it wasn't going to work. Would you have rather I married you and had kids and then left you 10 years later because I couldn't stand it anymore? Well maybe you would. At least you would have the 'kid' you're so worried about never having. Everything I did was for the best Jynefer."

Silence. What can I say to that? Well I can tell you what I did say. "Fuck you."

We will never agree. He will always continue to think that he is a hero for everything he did to me. He has no problems with the promises that he broke. It's all excusable because he "tried". Oh, well thanks for trying. I should "thank" him I guess for saving us from this "doomed" marriage that he is so certain we would have had.

So this should be enlightening for me, right? "I'm moving on." Well it's fuckin killing me on the inside. I couldn't sleep. I got like 3 hours. Yes I have decided to not be in love with him anymore. But it's not something I can just turn off. God how I wish it was.

I have made improvements, because I have the "desire" to want to move on to find someone else. Unfortunately, it makes me phyiscally ill to think about doing so. Still. Seriously, I am nauseous thinking about it right now.

Maybe if I felt better, if I wasn't so damned depressed. Not depressed from not being with him. The same damned depression that has seemed to haunt me my whole life. No one thinks there is really anything wrong with me. I look generally normal. I can laugh. I can go out. But no one seems to know that I am really no more than the walking dead.

I work for a company that makes a drug that treats people with a disease called Rheumatoid Arthirits. We are hired by this pharmaceutical company to assist patients with that disease. We help those who have no isurance, or cannot afford the cost, we send free materials that aid in their drug therapy and offer medical info from our nurses. Many patients call, or write in expressing their gratitude for our assistance, or to share their "story" of how their life has changed since discovering this medication. At my desk, I have the "Success Stories" book where we have bound the letters from patients that have written in to share what our drug has done for them. So when things get slow inbetween calls, I have decided to read some of them, to remind me of why I love my job in case I forget (which happens sometimes).

Without revealing names of course, and without breaking patient confidentiality, here is the gist of what some people have sent in:

...before [drug name here], a kind of pain that is not easy to describe was always with me. I would constantly realize something else I could no longer do because of my pain or discomfort. I was always exhausted. But sleep was somewhat of a double edged sword. I constantly craved it, and felt things would just be better if I could just sleep. But then sleep itself was painful and frustrating. I was never comfortable and turning over required great effort. No matter how I was positioned, something would hurt. In the morning it would take a half hour to get myself up and out of bed from the stiffness.

...I stopped belonging to community organizations. I couldn't make the meetings. I stopped socializing after work or on weekends, because I was either too tired or in too much pain. My pain remained constant and horrific. Then along came [drug name]. I had forgotten what feeling good is like. I now feel as if someone has cut my chains off. The pain is gone. I find myself singing all the time now. I actually WANT to get out of bed now. I no longer have to plan out what activities I do so I can conserve energy. No I can do whatever I want, WHEN I want.

The above descriptions... that is my life. That is what I feel everyday of my life. I don't even remember what it's like to not hurt everywhere EVERY day. I don't remember what it is like to be able to sit on the floor and jump up and grab the phone when it rings. Currently I dread ever having to get up from anywhere. My knees lock up and have pain the shoots through them like spears. My tailbone hurts no matter if it's a hard chair or a pillow I'm sitting on. Whenever I get up I walk a little hunched over for about 10 steps until the pain evens out or the stiffness goes away. I dread going out to clubs (when I can work up the energy to go) because I know I won't be able to sit anywhere. Standing for a long time in one place is out of the question. Even when I go to church, when everyone stands, I am always the one that has to sit after about 2 mintes. And when I look around, who do I see sitting too? 70, 80, 90 year olds. Sometimes even THEY can stand longer than me. I AM TWENTY-NINE YEARS OLD. It should not be this way. Things have progressively gotten worse over the last 4 years, but I remember the fatigue and not being able to stand in church or anywhere for periods of time as far back as probably 12 years old. My mom used to bitch me out for it, saying I was lazy. I hated that. I didn't want to be lazy. I remember crying, wondering why I couldn't do what everyone expected me to.

Okay so I've made a short story really long, but reading letters with stories like the above "letters" is heart crushing. My first reaction is "My God this is ME writing this letter! I feel like that. I want this miracle to happen to ME. There IS a treatment for this. I want to be like my friends again. I want to run. I want to swim. I want to go through my day without wondering if I have time for a nap."

So what do I do? I pour open my heart to my new doctor. She looks at my chart. She sees my current diagnosis (that most doctors consider a "made up" or "drug seeker" condition, or don't believe in at all) and says she can't positively diagnose me with RA at this time. Your joints aren't swollen or disfigured. Your bloodwork was borderline, but the numbers aren't "high" enough to actually diagnose RA.

The drug I represent has recorded side effects of lymphoma and lowers the immune system resulting in infections in some patients. It is understandably risky to prescribe it to what appears to be a healthy young woman of childbearing age. She flat out says she will NOT Rx it to me. I have been to 3 doctors in the last 5 years. They ran tests. They sent me to a Rheumatologist. The Rheumatologist says "you are describing Rheumatoid Arthritis to a T." They draw blood. They take X-Rays. They send me to Physical Therapy. So what happened? I hear this:

"I'm sorry, but none of the tests have come back conclusive. We can't find a diagnosis. All of your symptoms are pointing to RA. But we are going to have to diagnose you with Fibromyalgia."

So that term, Fibromyalgia, is permanently branded to my medical record, causing skeptical looks from physicians who now look at me as just a clinically depressed woman whose pain is caused from her depression, and a woman who wants the easy way out by asking for pain medication.

Why haven't they thought that just maybe (there's that fucking word "maybe" again) the reason I don't care to live like this anymore, and the reason I just don't seem to care at all about anything anymore, is depression caused by years of being held captive by pain? NOT the other way around? I'm not asking for Vicodin, Oxycontin, Fentanyl, Demerol...etc. I'm asking for a drug that is not even in that family. I'm begging my doctor to prescribe me a drug that could possibly cause dangerous infections and possible lymphoma, so that I can simply just want to live again. I want to risk just about anything just to feel like everyone else at my age.

And I'm being denied. I see the miracle sitting there, just a few inches out of reach. And I'm seeing it being handed to people next to me. I'm hearing about and watching their bodies change. Their faces no longer contorted by pain. But not me.

It's simple right? Go to another doctor. Then another, and another if I have to, until I find one that will try me on it. Well imagine this:

You walk in to your doctor. You throat hurts like fire. Your forehead is burning up. You are hot and cold, sweating and shivering at the same time. You KNOW like you KNOW that you have an infection. Strep throat, tonsilitis, whatever. You just know you are sick. BUT... the doctor walks in, looks at you, hears you describe your symptoms. Then orders bloodwork, does a throat culture and takes your temperature. You wait. He comes back, says well Ms. Jynefer, good news, you are perfectly fine! Your temp is 98.6F, your cultures came back negative, and your bloodwork shows a regular white count. A picture of perfect health. You sit in shock, shivering and sweating, wanting to cut your throat out because it hurts so bad. You open your mouth and show him the "pus pockets" on the back of your throat. You scream "What do you MEAN I'm healthy? Look at me! Are you blind?" He basically says but the TEST results don't lie. "You're FINE Jynefer. Here's your bill, and you can pay on your way out." Then you see him write "patient is seeing things that aren't there. Patient seems to be depressed and possibly just needs attention. Patient thinks and maybe even WANTS to be sick. Symptoms appear to be made up."


Now, how quick would you be to go to 3,4,5 more different doctors, only to have them read that comment by the previous doctor, and risk hearing someone tell you all that AGAIN? Unfortunately, the above fictional situation is not really parallel to mine. See, if that were me, I would go home, become severely dehydrated, and the untreated infection would enter the bloodstream, causing sepsis, heart damage, even death. Eventually, I would be able to say I TOLD YOU I WAS SICK, as I'm lying on my death bed. But my condition is not fatal, in and of itself. But it does make me wonder if it might be easier if it was.

This is me. I'm tired of being told I am crazy. I'm tired of being told that all I need to do is walk and stretch everyday, and take this antidepressant and I "should be fine". I'm tired of being sick and tired. I'm scared that I'm going to lose my anger at this situation, because the anger that I have is dwindling more and more as apathy kicks in, and that anger is the only thing that keeps me from disappearing.

I don't know what else to write. So I am stopping now. My writing needs to be for me now. Not friends. Not ex's who may or may not be reading this. ME. Despite my absence, I love blogging and love getting invited to peek into the lives of others that I would normally never have a chance to meet. But this is really all I've got to keep me sane. I stayed away for a while because, well I just didn't have the energy to think of something to write. Or the energy to even walk over to the computer some times. I don't mind others reading this. In fact sometimes a single comment can actually lift you up sometimes when you need it most. So thank you for the comments during my absense, I do really appreciate them.


At 6:41 AM, Blogger happyandblue2 said...

After reading the last part of this I don't know if you want comments or not but you haven't turned them off so..
I hope that you find a doctor that will listen to you. Being in constant pain isn't right.
If you are leaving blogging for a while I will miss you..

At 9:29 AM, Blogger Martini Love said...

You know how I feel about all of this and I hate that you are going through this you know I am here for you whenever you need me :)

At 5:12 PM, Blogger MJ said...

Jyn - I am sorry that you have to go through all of this. I hope that one day soon you will find a doctor who will understand what you are going through and be willing to help you.

About the boy situation: I know its hard but he has made it clear. You will find someone much better. In time.

At 8:34 PM, Blogger That Girl said...

first of all, good for you on saying "fuck you". perfect response for such a ridiculous excuse for his commitment issues.

my mother was recently diagnosed with RA. my grandmother had it too. i have weird joint problems where sometimes i feel like my ankles or my knees need to be cracked and they ache. i'm not sure if they're early signs or not.

i'm so sorry for your pain. i once worked with someone who had fibromyalgia. i know she was taking something for her discomfort and going to physical therapy. i hope you can find someone who will treat you. don't give up.

At 9:03 PM, Blogger Amber Lynn said...

You NEED to call a doctor in Sedona. I know its a drive, but I swear whatever it is that you have, she can help!


Tell her Amber referred you. You HAVE to go in.

Love ya!

At 12:23 AM, Blogger dan said...

a frined of mine who has MS had similar trouble getting prescribed beta-interferon and eventually had to resort to the media after years of waiting.

i hate to label this as 'your story' as story is not the word for it, but 'your story' is very much a human interest story and you should go to the media.

this may not be the most dignified approach, but you need to do it, not just for yourself, but for others in your predicament.

perhaps you should start a focus group with fellow sufferers who also aren't getting that dangerous prescription.

you've told that man 'fuck you' now tell it to the world.

you deserve better, jyny, and i know you feel like you don't have any fight left in you after all those crappy doctors, but you have to.

your human rights are being neglected.

At 8:29 PM, Blogger Rainypete said...

I hope you find a physician that can actually listen to you and help you, instead of simply putting you off as an attention seeker.

YOu're better off with someone who actually likes you than beating your head against a brick wall for what if.

At 9:54 PM, Blogger happyandblue2 said...

Happy Thanksgiving..

At 7:52 PM, Blogger That Girl said...

hope you are well.


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