My Life with Lupus

I tried to sleep yesterday morning. Really, I did. That lasted about an hour. Well, actually less than that before the barrage of stress overwhelmed me and I found myself in tears. I don’t do that often. Really. Those who are close to me know the stress well and where it stems from these days. I started thinking too much, which is about par for the course in my head, but then, I really started thinking about what’s been going on with me over the last what seems umpteen years. I felt like I had to get up and write this down. Maybe it’s for the best, as I’m about to end a chapter in my life. Don’t worry, the book is still in progress.

It’s really only been twelve years, just a bit over. It all started in May 1997.

Twelve years ago, the doctors diagnosed me with something called autoimmune hepatitis. It’s a liver disorder. I may have explained it before. Essentially, my body is attacking itself. Fun, right? No, not really. This wonderful disease prevented me from having children, and is the prime suspect of a miscarriage – my one and only pregnancy.

I can no longer have children, mostly by my own doing. I had a tubal ligation and an ablation because I didn’t want to experience another horrid miscarriage, and I was supposed to be on specific medications for the rest of my life that would cause birth defects anyway. One of those meds is the other suspect for causing the miscarriage. Yes, I’m bitter about it. I’ve always wanted to be a mom. I’m not on any meds now, but that has to do with the fact that I have no health insurance. Tell me again why you hate social medicine. I just can’t agree. Sorry. I’ve been through the insurance ringer and have experienced all of the major insurance companies. To say that I hate them would be kind.

About four or five years ago, my wonderful Rheumatologist finally diagnosed me with lupus and fibromyalgia. They couldn’t see it twelve years ago, though they did try. The lupus, for me, is a skin condition. I’m photosensitive now, and have scars covering my chest, arms and face that stem from the flare-ups. That’s real great for self-esteem issues, let me tell ya. However, they’re not really noticeable unless you’re close to me. But I can see them. Every day. The worst one is on my upper lip. That was the first place the lupus decided to show itself about eight years ago. It puffed up for six months, and when it finally faded, I had these lovely wrinkles left in its place that make me look really old sometimes, mostly when I’m tired. Some days are better than others and that goes for more than my upper lip. I’ll get to that in a minute. The fibromyalgia makes me hurt… everywhere and constantly. It affects my joints and muscles. Waking up in the morning/afternoon/evening is not fun. I have to move slowly.

When I say that some days are better than others, what I mean is that I have good days and bad days. The good days are awesome and I have this amazing burst of energy that gets me through the work I need to do. The bad days really suck and come more frequently anymore. They are those days where I don’t feel like doing anything at all, when I don’t have the energy to do much. Mostly, I just write on those days, if a story feels like talking to me, but that hasn’t been happening lately. When I’m actually working, as in I have a job, I just get through the day. I don’t take those bad days off. I’ve learned to work through them and get done what I need to get done. The pain doesn’t matter, the lack of energy doesn’t matter. All that matters is that I get the work done. Preoccupation keeps my mind off the pain and lack of energy. When I have nothing to do but write I can work for hours. But only when it’s creative writing. The freelance writing I do is not creative. In fact, it can be quite draining. I should find something else. Part of the reason for my being able to work through a bad day is because I have a high pain tolerance, so the pain I feel doesn’t really affect my movement because I’ve lived with it for so long now. Caffeine and protein take care of the lack of energy for me, but I really shouldn’t have any form of caffeine.

The three diseases combined, which are all linked by the way, create the insomniac that is me. It’s very difficult to sleep when your body won’t shut down completely. The brain is another story and deals with my creativity. That’s nearly impossible to shut down, but I have managed on occasion.

About three hours after I started this post, and after watching Madagascar 2, I finally felt tired enough to fall asleep. And I did sleep, for about ten hours, which seems to be the norm these days. I don’t like it. I don’t like sleeping completely through the day. It makes me feel like I’ve wasted so much time, but I’m having trouble fixing it.

I don’t know what in the hell is wrong with me these past couple of days. All I know is that I’m starting to feel lost again and I can’t find my way out of the maze. I don’t know where to begin, where I want to go (aside from writing), or how I’m going to get there. Maybe it’s the lupus fog, too. There is such a thing. It causes confusion and I feel like I have no sense of purpose right now.

All I can do is hope that this will clear up in a day or two, and if it doesn’t, I’m going to have to force it because I just can’t go on like this much longer. I’m frightened, yes. I don’t know what’s going to happen for me in the near future. No one does. I don’t know what the lupus holds in store for me, or the fibro. I can tell you that the flare-ups are happening again. I was in remission for a long time—the last eight years. Not so much now.

So what do all of my troubles have to do with lupus? Well, the lupus doesn’t help. The fog doesn’t help. In fact, it just instigates it all, especially these days. Most days, I’m just too damn tired to leave the house. That makes it a bit difficult to find a job. I could apply for disability, yes, but by the time it gets approved, I won’t have a house to live in anymore.

I’ve come out of the cocoon I’ve been in for the last six months. It happens during a life-altering event such as I have been through recently. You know the one, where you thought everything was in place for your life and it all came crashing down at once. Some of you met me during this cocooned time. Some knew me beforehand. I haven’t pulled away from the shell quite yet, but I’m getting there. I have to find a job, and that scares me too because of my last experience. I don’t really want to work for anyone anymore because of what they did. This job market isn’t the best for starting one’s life over, either. I think it’s part of the reason I want to move out of Arizona. I mean, if I’m going to start over, I may as well go for it completely. Unfortunately, I don’t have the means to get there, so I have to find something here in this hellhole.

So yeah, this is where I’m at right now. Trying to focus, trying to figure things out to move me forward because I really don’t want to fall backward anymore. Losing the house will be bad enough.

This will likely be the last “life in hell” type of post I’ll make. I suppose that’s good for both of us. Now, on to more positive thinking…

Oh, and if you pray, please say a prayer for my cousin Lucy. She’ll be 90 soon and her breast cancer is back. It’s not looking good.

4 thoughts on “My Life with Lupus”

  1. oh Jinxie. Thank you for explaining to the point where your friends that aren't in the same state as you can understand. You sweet girl. File for the disability anyway. Even if you do lose your house. The disability will kick in and you can keep going. You can file to get the medications you need. Please look into your options. I'm not sure how the government works in Arizona, but it's pretty intuitive here in Texas. I love you sweetie. Please keep us all posted.


  2. I am so sorry that you are going through all this. Having both Fibro and CFIDS myself, I understand much of what you are going through. The cocoon and then sudden panic as you see the direction your life is going all to clearly. The fog makes everything so difficult to push through, and all you do is end up muddling. Hang in there and keep writing. I agree with Shadows, apply for disability. I know the high pain tolerance can lead to letting many things go and end up piling up to an unmanageable mess. Make sure that you take care of yourself first and foremost. All that aside, imagine the stories that this time will garner. Word Verification: Sclog = Swedish Clog worn only at the most trendy night clubs.


  3. I just remembered – you have to be completely disabled for a year prior to applying for disability benefits. I was working a year ago. This system sucks. I'd have to not work until October in order to even apply. I can't survive that long without money coming in. My uncle has been disabled for God know how long now and still isn't receiving his benefits.I don't have a choice. I have to find some form of work I can do.


  4. We have been there financially, with no jobs. I'll never forget: living in a church, living off of $65/a week (sometimes less), eating these cheap chicken sandwiches every night (blah), no phones, the many times my cable and power have been cut off… Been there, done that and it's not fun. It's scary as hell. Everything we have today is from clawing our way out of no home and no money. You will do it, you will make it. I know you can.


Comments are closed.