I Have A Secret

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When meeting someone new and the subject happens to come up, I will mention my Lupus. I am in fact very open about it. I’m not looking for attention like a whore on a corner; I just want people to be aware of what is out there in the “real world.” Some people get diagnosed or misdiagnosed after months of not knowing because it mimics so many other auto-immune diseases. Fortunately, I was lucky to be diagnosed right away. How can getting diagnosed be lucky? Because you don’t have to go through any extra tests and you can start medication right away.

When it comes to the “dating world” within the “real world” I used to keep quiet about the subject until after I had been on a few dates with someone. I wanted them to see me for who I am first and not my condition.

But things have changed since I decided to quit my full time job while waiting to be approved for Social Security. I don’t want men to think that I am just a bum that sits around all day sucking off the government’s teat. But I know men have to be curious when they find out that I only have a part time job. I tell them about my blogs and novel that I am working on which leads them to ask, “What are you writing about?” That is when I reveal my secret and they know from the very beginning of my condition instead of after a few dates.

But now I am beginning to wonder if I should keep my mouth locked shut. They never have chapters about this in the “What Men are Thinking” books. I can’t avoid the issue because men take notice that I don’t work every day and I don’t work all day on those days. I view telling the person early is not a bad thing because they will figure out later on anyway. And the era of trying to find someone without baggage is long gone.  Everyone has baggage. I’m not trying to be negative; I’m just being realistic.

I believe it is easier to date a friend or someone that already knows of my Lupus. However, all the people I know are now married…

What I want to know from Lupus patients is their approach when it comes to meeting a potential mate for the first time. All those Lupies out there—do you mention your Lupus at the beginning or wait until some time has passed? What have you found that works in the dating world? What doesn’t work?

And if there are any future mates reading this right now, I want to know your thoughts on this. Keep it a secret or lay it out right away?




*Thanks to nandoism.com for use of photo


March ER Visit

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Friday morning on March 16th, I woke up and felt nauseated. ‘Crap,’ I thought to myself. ‘I don’t want the flu!’ We didn’t have any normal saltine crackers so I took a couple of Bunger’s Garden Ritz crackers and started to munch on them. Let me tell you now before you try it yourself, they don’t work so don’t even try to eat them when nauseated. Since they made me feel worse, I was only able to choke down one.

Bunger saw that I wasn’t feeling well and mentioned that I should maybe call my mom. I blew him off figuring that I had the flu and nothing more. Soon my chest started to hurt. The only other time I had experienced this pain was when I was living with Mel last year. With that, I ended up going to the doctors, having tons of tests done, only to have them say nothing was really wrong.

But most of all I remember the excruciating pain. The pain was so severe that it made breathing, an autonomic function, difficult to do. And I could tell this was the same pain.

Knowing that it was Friday and that the doctor’s offices would be at full capacity, I called my mom and told her to take me to the ER.

We arrived at Sanford ER around 9:00. I was attended to right away since the ER was pretty deserted (Note: If you need to go to the ER, go around hours when businesses are just opening). The staff was very nice; although it could have been because I was wearing my Sanford employee jacket and was essentially “one of them.” They performed every test you could think of (x-rays, blood work, etc.).

The testing went much easier this time since I knew which tests they would perform. I wasn’t scared and sobbing like last time. And I was proud of myself that I didn’t cry when they put the IV in me. Oh how I despise when they have to do that.

Like the previous time, everything came back ok and the tests showed nothing was out of place, inflamed, etc. It was now time for the magical medications to help make me pain free. I was given a shot of Morphine but it had little effect on me. I was also then given two Percocet and a Toradol shot which finally brought down the pain level. The doctor gave me an order to rest and no exerting myself. I was so relieved that I didn’t have to work that weekend.

Once I was home I posted my adventure on Facebook. My friend Britney, who lives in a different state and also has Lupus, wrote “It’s the damn Lupus. I used to get BAD cramps in my legs and I couldn’t move them. Then other times I would get chest pains as well and I couldn’t breathe. My Rheum gave me Toradol. I hope you’re ok! Let me know if I can do anything!”

I went to her page and asked her if Lupus could do that and that my symptoms sounded a lot like hers. I wrote, ‘It suddenly comes on & you need to do something stat because it makes it hard to breathe. I don’t know if Toradol will work for me. First they gave me morphine & that didn’t work. Then they gave me Toradol shot plus two Percocet pills & that finally started to ease it. Thanks for letting me know. I figured it had to be the Lupus or Fibro.’ Even with having the disease for 12 years, I am still learning more about it.

She responded and said, ‘Yep! I had my share of ER and Urgent Care visits. It sucks! Whatever works for you, stick with it. And make sure your primary stays in the loop with everything, especially your ER trips. Also, make sure you document and make sure it’s in your chart what works for you and what you have already tried that doesn’t work. Trust me; it will save you future headaches with the system! Good luck dear and keep me posted!’

The experience had me thinking that I don’t know what I would do without my mom.  It scares me to think of how it would be without her (I know it’s a concern of hers too). I knew there was no way I could drive myself and don’t have the money to pay for an ambulance bill. Who will help take care of me? Who will be my rock? I hope I eventually find someone that would want to help take care of me when it’s needed and everything works out in the end.




*Special thanks to Isbor for letting me use picture