Journal

Hi again..

Ok so it's been a while since I've been on here. I try to avoid coming on here as it is a reminder of my ongoing mystery diagnosis. So, here I am, with new symptoms to display. For the past three weeks or so, I've had a recurrance of the following new symptoms: really bad headaches (feels like my skull is being sliced in half), my right foot has this burning-cramping feeling that has radiated up my calf and in my thigh- feels like a charlie horse that doesn't go away for several hours and sometimes brought on by one drink of alcohol, nausea, my pee is cloudy, highly unusual clumsiness that has caused several brusies and cuts, memory is increasingly worse, and as of yesterday, I've started to have abdominal cramping and diherrea, felt strange pain in my right arm, then suddenly I could hardly open and close my right hand- accompanied by a burning cramping feeling in my tricep, then followed by numbness in the back of my hand. I also took notice last night that my right foot was significantly colder then my left. My feet are always really cold- but this was odd. I feel like my muscles have generally weakened, and at times I feel extremely out of it and fatigued. My ears have also been ringing, but I'm not sure if that has anything to do with it. 

I have a doctors appointment today at 1:40, so I hope that they can figure this out and diagnose me and be done with it. I really hope that this is not something completely new, but a part of whatever the mystery that is my health.

I really would hope to get cured or at least treated for whatever is going on, as I've recently made the decision to go back to school for a completely different career. I've always had an interest in healthcare, but you can thank my mystery diagnosis for intriguing me to the point where I want to dedicate myself to it.

Help!

Jessica 

So, I thought I was doing really well since I haven't had a flare since November (I think that was my last flare- I got sick in Feburary but that was just a virus that was going around since I didn't react to the prednisone like I normally do.)

So I woke up this past Friday and immediately knew it was the begining of a flare up. Every muscle in my body ached and was tender to touch. My entire back hurt, my neck, and my head. That progressed to my usual fever, severe unwavering headache, and the inability to completely swallow my own saliva due to my glands being sore. Each time I get sick, I feel exactly the same. Doctors can't see me today, and today I've feel the worst. I refuse to take anymore prednisone because it made me gain weight and has awful side effects. I guess since I'm laid off (have been since the end of Feb), I can afford to lay in bed.

Oh and by the way, did I tell you that I was basically forced to leave my company because they had been discriminating against me due to all my sick time and doctors appointments?? What am I supposed to do? Anyway, I'm not going to go on a tanget because I could go on about that forever- but how am I supposed to ever be sucessful in my career if I'm constantly getting these horrific fevers and need to go to the doctors on a regular basis?? And in addition, WHY can't they give me a definitive diagnosis??????? It's been 2 years since the doctors finally realized that I must have an autoimmune disease, and 7 years since I've been getting sick.  

Anyway, I feel like absolute crap, and thankfully, my mom had off today and is coming over. My boyfriend works ridiculous hours so I don't expect to see him tonight. He gets stressed out when I am sick because he doesnt understand the whole doctor appointment issue and thinks I'm making excuses not to go. The only thing the doctors can continue to do is take my blood to see if there has been any changes. Other then that, they just treat the symptoms as they come. I haven't been that consistent in taking my prednisone ever since I stopped having a routine, so it could potentially be my fault for this flare. Ugh...what am I going to do with out health insurance???? Ahh... I don't even want to think about it...I'm gonna go lay down and will this fever and pain away.

So I just got back from my new primary doctor appointment. What a waste of time. I'm so aggravated I could scream. This week has been hell. First, I had an appointment with my gyno on Monday because I have some bacterial infection down there. They just called me back to tell me that I do in fact have an infection, but since they told me via voicemail, I'm not sure what it is quite yet.

Next, I noticed a rash last night that had developed all the way across my lower back. It's large and its little red bumps. I took pictures of it in case it went away, and then told my new primary about it. She didn't do so much as shrug her shoulders. She didn't even take the time to review my file. She only asked me if I've changed detergents. I'm like, don't you think that if I had done something as simple as that, change my routine, change my soap, wear strange fabric, whatever, I would be asking a doctor for thier opinion??? She just was like, ok, well maybe you should just exercise more. (Keep in mind, this doctor was short and heavy, and I am tall and skinny.) I was like, well maybe if you read my file you could see I have an ongoing autoimmune disease and the whole reason I switched to you in particular was because I was told you were an excellant diagnostic doctor!!! UGH. Instead, what I actually said was, "um ok." Exercise has nothing to do with my illness. I haven't lately, because I'm too damn tired to go. I wanted to go this week for the first time in two weeks, but couldn't because of all these damn doctors appointments and christmas shopping and decorating. So, this doctor really pissed me off when she was like, "well, I guess you don't really need to see me since you already have all of your specialists. so just keep in touch when you need referrals." AWESOME. Not at all what I was looking for.

On a SIDE note... my infectious disease doctor called me back asking me about the specifics of my rash, and was very concerned. She insisted I get my bloodwork done as soon as possible. Thank God someone actually cares. It's like, a little help here? Meanwhile, this rash, it kinda hurts. It's making my back a little bit achy. Odd right? Did I also mention from time to time, I wanna say like, every other day, I have this weird feeling that something is in my mouth, and I pull it out, and its a piece of skin. WTF is that? 

I'm just angry because of the doctor...and bc my coworkers were belittling me and my rash. They were like, "its probably just a rash jess. don't make it into something its not. primary docs don't do anything." I HATE when people who know nothing about a subject are so opinionated about something they know NOTHING about...and speak thier mind to someone who is much more educated on the subject. Not to mention, rashes are a huge sign of Lupus. I can't stand certain people right now!!!