Fizzykiss , 32

Well I just got back from the rheumatologist. On top of having Lupus, I also have CREST syndrome (limited scleroderma). I have to go back in 2 months and he will order a bunch of tests (echocardiogram, scope of my esophagus, all that good stuff) to see how everything is and then continue to monitor everything afterwards. I swear I'm a freaking mess! I need to order a new body, one a bit taller, skinnier, and that won't try to attack and kill itself.

On a better note I am off to Vegas tonight until Monday evening. WOOHOO!!!!!!!!!!!!!!!!!!!

I hate people, I really do. Especially those that don't have kids and feel they need to tell parents how to be a parent. Granted that there are alot of horrible parents out there that need someone to step in, but still, I'm not one of them.

Then what pisses me off even more is when people who are sitting there letting their child run wild but then feel the need to make a comment about my child when she got mad because I wouldn't let her get up and run wild.

I had dr appointment this morning, and since JayLyn isn't allowed at school right now (she has a lung infection) she came with me. She was sitting there no problem and this woman with 5 kids came in, the girls were about Jay's age, give or take a couple of years, and then 2 small boys.

These kids immediately went crazy running and screaming. Now this waiting room is big enough for 10 chairs. What free space there is these kids used it to run wild. Throw magazines everywhere, the kleenex box was emptied one kleenex at a time. Jay wanted to get up and I told her no. So she got annoyed and started crying and this woman had the nerve to tell me I should take her outside if she's going to act like that. Thankfully they called me back right then.


Dr ordered more blood tests. I had an ultrasound on my thyroid in Nov and then again in Feb and there is a difference in the size. Its larger, but borderline. So she ordered more thyroid tests and then depending on those, I may have to add an endocrinologist to my list of doctors.

This is Sadie. We rescued her from the animal shelter when she was 6 weeks old (I was pregnant with the girls). She's part Shar Pei, part we don't know what.


This is Blue. He was given to us by a friend. He was the only pup in the liter with the blond fur and blue eyes. The rest of them resembled their mama, a german shepard. We've had him since the girls were 14 months old.

We trust doctors enough to let them take care of us when we are sick, or pregnant, right? So why can't people trust their doctor enough to follow orders?

A friend of mine had a miscarriage in Nov. Doctor told her to wait at least 6 months to even try again, but suggested a year. She refused to listen to him and got pregnant, she found out Feb 19th. She miscarried on Wed. Her doctor pretty much told her I told you so.

Now this is where people are going to bash the doctor, however, he told her point blank to wait to get pregnant because the risk of another miscarriage is greater within the first few months.

The 1st miscarriage killed her. She laid in bed for a week and did nothing but cried. I understand her pain, I really do. However, this 2nd time around, I want to scream I told you so.

I haven't, and I won't.

I'm not that much of a bitch. I just don't understand not listening to your doctor. Its not like they pull these numbers out of their ass for the hell of it.


Thats my vent for right now.

Thursday I actually made it all day without a nap. Unfortunately that was the only day. I joined a yahoo group for moms with lupus and most of those ladies told me I need to stop feeling bad for needing a nap and begin to accept it as part of my life.

Its hard. I've always been the type of person thats up and moving and things to do and that need to be done. Like cleaning my house. SO I feel extremely lazy when I need to take a nap on good days and can barely get out of bed on bad days.

I also have to learn to take 1 day at a time instead of planning. This is going to be the biggest challenge. With 3 kids its soooooo much easier to plan for a week or a month and now I have to learn to go with the flow and how I am feeling. The kids aren't going to like this, but hopefully in a couple of months and meds are working full force things will be somewhat back to normal.

For those that have KN'd me. I know that people with Lupus can live a normal life. The thing is, right now, I just started the meds for it. It can take 12 weeks or more for meds to fully work, but that means being able to tolerate the first med I am on. Its trial and error to get the right med.

There is no guarentee that meds will even work to give me a normal life. I've read up on all of this and I talked to my doctor about this. I want to know everything so I'm not taken by surprise. Trust me I'm aiming for a normal life, or as close to normal as I can get. I just want to be prepared for those bumps down the road.


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I know you're all probably sick of me by now, but this is now part of my life, a big part.

I have 3 kids that I plan on watching grow up. I plan on watching them get married, have babies, all the good stuff. Doing this pain free and being able to make it through the day without needing a nap would be great. However the only way for that to be a possiblity is to find a cure for Lupus.

I'm asking you all for help. I'm asking all of you to take the tag below and post in your journals, profiles, journal descriptions, where ever you can think of.


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