Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Just A Little Pizzed Off!

Ok...I know I have been sick, ok I know that I have been REALLY sick...sick enough that yes I am sure for the 27th time I should have been in the hospital.

I have pretty much been on 1000mgs of Amox, 600mgs Omnicef, Xopenex breathing treatments, inhalers and snuck some pred in there for the last 9 days.

Today was Remicade day...I went no temp, found out I have lost another inch (so I am pissed about that) use to be 5'9 now I am 5'7 thanks AS and my Doc decides well because you are so sick all the time..I would like you to have a chest xray to make sure you are clear.

I understand but knowing I REALLY need this infusion to get the freakin $5000.00 deductible out of the way, so me and Tori drive to another office wait, wait, wait get the xrays bring them back with me, get in the car and I pull them out and look at them....CRAP I STILL freakin have pneumonia. So I take them back and not wanting to sound like a know it all or the Dr wanna be I am give them the xrays....Martha Ann (Docs wife) comes in and says well 3 of us have deduced that you still have pneumonia......Sooooooo no infusion today MAYBE in 10 days IF he doesn't want me to do another round of antibiotics.

THAT I am told is how precarious my health is...my Doc said Lisa with your history and the fact that we give you such high doses every 4 weeks if we infuse you today you would almost with certainty wind up in the hospital...I have had some patients get over pneumonia thinking they were over it got infused wound up in the hospital and because the infection was so great and their resistance was so low they died...you are one of those catagory of people.

I gave him a big hug and told him thanks for looking out for me, hopefully see him in 10 days...I know he is right but I so needed this for the deductible for the family and for our meds now this will push any of us getting our meds, Ethans therapy, my therapy all that back to at least March 1st..but hey Im alive right???

Guess I will swallow another Omnicef and go back to bed, thanks for listening.

Hugs,

Lisa

Well, Sis:
I listened, cause I think I could hear you behind every word.
I thought about it and we all want you to get better. I am not sure what it will take.
Stay the course, it could be worse..... keep the faith . you are loved, and remember that is in being loved and in loving that we get our source of worth and hope.
I am sorry you are so sick.
My dear child, for $14.95 I will breath into a clean hanky and mail it to you..... just a bit of jesting, forgive my weary soul, ok>
still love me? I thought so..

Br'er Lon

sorry to hear how sick you are and especially that you have to skip the remicade for now. but hoping that that explains why you've been so fatigued and sleeping so much and instead not the heart as the pneumonia you WILL kick!

gentle hugs for a speedy recovery from the pneumonia and feeling so especially sick

I'm sorry you didn't get your infusion. I hope you get over this pneumonia soon. I know you don't feel well. You just gotta stick with the plan until you get it knocked down. I have been keeping you in my prayers.

Lisa, please please please listen to your doc. I just had a friend pass away this week because of that very same problem that started last year from her infusions and recurrent lung problems. I know how much better you will feel with the infusions but please make sure you are 100% pneumonia free. You have been so sick and your body is so weak, I worry about you.
I will continue to keep you in my prayers sweetie.
Cindy

sure hoping you get over the pneumonia quick and get the your infusion sending prayers your way take, care angelmom

I'm so sorry!

Lisa
Sorry to hear what your going through. I sounds somewhat familiar. You sure you don't also have Sarcoidosis?! (Although instead of being told they see pneumonia they think it's lung cancer or lymphoma. ~ Biopsy is the only way to tell different.) If the cough and symptoms continue without resolving you might think about just mentioning it. ALOT of physicians don't have extensive knowledge about Sarcoidosis though, just basic. Rheumatologists and Pulmonologists are the most knowledgable.

Just a thought I'd mention it as I know you've been ill a lot this year. It can effect any organ, heart included. You sound very similar to me.- I now have it in the Lymph nodes, salivary glands, lungs and possibly now the liver. (My Rheumy is after me as I'm way behind in my CT scans due to insurance
issues.)

I hope you start feeling better soon and can get your infusion! Take care Lisa.
God Bless,
Trae~

Lon,

I appreciate the words especially after being sick this long. I will be sending that check for $14.95 and will be expecting the hanky in the mail..lol

Thanks for cheering me up and prayers would be appreciated.

Hugs to you and Lin

Lisa

Sue,

I think you are right, I probly haven't wanted to admit how sick i really have been, even after 9 days I am still sleeping around a total of 16, 18 hours a day.

Someone mentioned to me that it could be viral pneumonia which is starting to really worry me since I have been on so many antibiotics and still have it.

Thanks for the hugs and support, it means alot.

Lisa