View Full Version : Finally, they agree I have AI disorders!

02-25-2011, 07:05 PM
Just got out of another hospital stay. This was a truly bad one! All day long my son and I were trotting around, getting groceries, enjoying the day and then bam, around 8:00pm all my joints swoll up, turned red, I started getting dime-sized bruises all over my legs and I don't think there was a pain chart that went high enough for this flare up! The Renauds bloomed bright purple. It had to be one of the worst nights of my life, and I've had some bad ones. I was even vomiting from the pain.

Fortunately, my pcp's office is literally next door to the hospital so I saw him frequently through this experience over the next few days and we agreed, there was NO way this was the fibro. And now, since this is most certainly Lupus, I probably have the shrinking lung disease which puts me in very serious territory. We've decided to get me into the prestigious Washington University Med Center and he thinks that the shrinking lung disease, since it's so rare, will get me in faster. My mom and dad want me to go to Cleveland Clinic but I just can't deal with the thought of a trip. I'm TOO tired!

So, while we aren't positive exactly what's happening, we know there's a lot going on. My INR (blood thickness) is all over the place and my hair is falling out big time now. It's as if the disease didn't feel it was getting the proper attention and is now demanding it.

All I know is that I'm scared. We all rarely talk about it on this site (or I've missed it which is easy to believe), but I don't want to die yet and some of the stuff I've been experiencing just doesn't make it that hard to imagine. My chest still hurts all of the time but when your joints are screaming in pain, it's easier to overlook the chest concerns. So far those tests are coming out okay so I've moved that to the back burner for now.

Anyway, thanks for listening. Any suggestions are welcome as are prayers. We'll get through this together!

02-25-2011, 07:55 PM
First thing I want you to do is take a deep breath. You have been moving so fast and getting so sick that it is overwhelming. I know when you are in a flare things get so bad that that you do worry about not making it and I am not going to lie and say it doesn't happen but it is more rare then it use to be. It is GOOD news that they are accepting the AI diagnosis because now they will begin to be more proactive and less reactionary as far as your illnesses go. I know that it is hard to do but it will only make things worse if you toss in the worry over dieing. This is a big "don't borrow trouble" moment. You have posted here over and over about how you knew what was wrong and that they didn't listen. You were scared that if someone didn't listen soon you were just going to get worse and worse. Guess what? They are FINALLY listening! Yes, it got bad but you now have their attention and you won't be ignored anymore. Now you can start on the path to managing a disease instead of letting it ravage you.

You will be in my thoughts and yes, we will all get through this together! We love ya and will be waiting for more details

02-26-2011, 05:01 AM
You are going through some tough times right now, I am so sorry.
It really makes me angry, that it had to come to this, before the doctors do something.
Why aren't they listening to us?
I wish you all the best and the best doctors.


02-26-2011, 05:22 AM
Wow im sorry you are so ill and are going through so much and you are definately in my prayers. Its ok to think about what if you die and dont make it through this crisis but dont get so caught up in it that you forget to live. Im sorry you are in so much pain but keep fightting and always remember that you will beat this disease and treat this like another hurdle you have to jump over. Its ok too be scared , it only makes us human. Im sending all the best wishes for a speedy recovery. pain free hug .Slim. let us know how everthing is goinng.

02-26-2011, 07:49 AM
I am so sorry for all that you are going through i hope they come up with a better treatment plan for your health. These things can be so overwhelming for all of us to deal with. Bonita

02-26-2011, 01:34 PM
Thank you all so much for your support and clear-headed thinking. It is your type of rational and kind input that helps people like me get through this stuff. I've never encountered anything like what I went through last week and the round-the-clock care really helped to stabilize me. There are times when we tease about me being in long term care but honestly, it doesn't sound so bad but then I think about my son and all of my animals and realize I can't have everything exactly the way I want it. Wouldn't that be nice, though?

My concerns about death are fleeting and usually go hand in hand with the amount of pain I'm in. I also get frustrated because I took such good care of myself before all of this started so no matter how many bran muffins a person eats, there "ain't" no guarantees! I promise to put those thoughts to the very back of my mind and grab the more positive thoughts to the forefront. And now that I have medicaid, I can afford counselling which will undoubtably help a lot. I have a very good friend who is into meditation big time and a while back I bought a book on it so I think I may drag that book out and start spending some time each day learning more about how it can help this condition. I have all the tools, now I just need to start constructing!

Thank you again! And you're right, it took a big bang but now the doctors are listening and I have their full attention (or semi-full, let's not get extreme!). God bless and I really do keep all of you in my prayers. I know I"m not the only one suffering -- right now I'm just the loudest one!