Welcome To On The Lupie Side Of The Street!

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So this is my first post on this blog! Yippee! For those of you who don't know, about a month ago I was diagnosed with Systemic Lupus Erythematosus. I have been sick off and on for about 3 years and living with a very unappealing diagnosis. I was able to get a doctor to listen to me and take another look at my case from a different point of view. Lots of tests, paperwork, and waiting later, I had a diagnosis that completely changed my life for the better. It's been a rough few years but I'm hoping my life will only go up from here. I'm trying to start fresh while not forgetting my past. Oh wait a minute, I forget my past all the time!

At this point most people start with the phrase "I suffer from..." Well I don't see it that way, I live with arthritis which on some days can be debilitating. I have a lot of stomach problems, especially nausea and abdominal pain. Extreme fatigue while also dealing with insomnia is part of my daily life. I have pleurisy and pericarditis which means the lining of my lungs and heart are inflamed. Talk about a double whammy! I also have have Raynauds Syndrome which makes my hands and feet very cold, my skin is a purple and red with a lace like pattern on it. Fevers are something that pop up out of nowhere for me. My body goes from one temperature extreme to the other, it doesn't regulate itself very well. I tend to bleed and bruise easily, don't be surprised if my nose starts randomly.

I also have problems with my long and short term memory. It's not like I will forget to turn the stove off, I just have a hard time telling you what I did a few days ago. I also don't start remembering much of my younger years until about the year 2000. I remember the most from high school and beyond. But don't ask me about my life as a young child, I can't really tell you. It doesn't bother me all that much but some people, especially my mother, freak out over this.

Another one of my issues is I have a lot of oral problems which is very common for someone with lupus. Part of it is genetic and part of it is the lupus (yes, I know lupus can be genetic but when I said genetic I meant it runs in my family). Because of this I'm going to basically be sticking what you would pay for a car in my mouth. Pretty cool huh? That's why I have the donation button on the side of this blog. Any little bit helps, I know in this economy, money is tight for everyone. But even if you can only give $1, I will appreciate it more than you know! I need a helping hand to get me back up so I can go out there and help others!

Right now the grand total for my mouth is looking to be around a little over $20,000 if insurance doesn't cover it. I'm currently filing paperwork with my insurance and I'm waiting to hear back. But there is no guarantee because my dental insurance really hates me! On second thought, most insurance companies hate me. If insurance does decide to cover part of it, my mouth will cost me $12,000.

Of course you could say, "Why not just get dentures?" Here's my answer... "I'M 23 YEARS OLD OKAY?" I need my entire mouth grafted, part of the tissue will be taken from me, some of it from dead people (mmm chewy), and I'm hoping part of it will be this new chemical compound that looks and feels like your own gums (I'm hoping that my body will be happier with that and will be less likely to attack it). Once I get my mouth grafted which will take forever and a day, I need to start getting crowns and sealants. And don't say "Just brush your teeth." I took my Christmas money and bought a Sonicare toothbrush and a Waterpik. The average person spends about 10 minutes on their mouth a day. I have to spend an hour. I've had impeccable oral care my entire life but I was genetically predispositioned to gum disease and the lupus is not helping this situation.

People are also going to say "Go get a job to pay for it all!" Currently, I'm still in the beginning phases of my new medication, I can't get a job. Some days I'm fully functional and other days it's all I can do to take my medicine. I can't get a job and up and quit to get my oral surgeries either. Each surgery will basically put me on the sidelines for a week. No eating, no talking, no nothing. I will be living off of broth and water. I don't consume sugar like the rest of the world does. I can't drink sodas or coffee. My diet is extremely limited. So for a week, I'm going to be tired and weak, meaning I can't work.

Once my health issues get resolved, I'm getting a job. I am so excited at the thought of it. Currently I am writing letters to local businesses encouraging them to make their stores more handicapped accessible. I'm not getting paid for this, but I feel like my letters might influence businesses to become better places for all to shop at. I just have to get myself in order right now. I feel so selfish having to focus so much on myself. But honestly, I don't have much of a choice. If I ignore myself the the issues my body has it will only get worse. If I'm worse, I'm not going to be much help to anyone.

Well, I have to go now and throw myself back into paperwork. Maybe the Lupie Fairy can come save me for a bit? Thank you everyone for reading this! You're awesome:-)

Bisous!
Loverly Lupie Me

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