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

Sorry you have to skip the infusion. I understand what it means to you....really. All those deductibles staring you in the face--really do understand. Hope the antibiotics kick in better than ever. Your doc is right....you may have arthritis in remission, but if you're dead, it won't matter.

Donna,

Thank you the sweet posts mean alot...as you know I have been pretty down when your that sick for so long...and I look at like Mig, Kat and others that have done Remicade for a long time with no infections. I wonder if having the Remicade is making me just as sick as not having them..I mean before I had my Dr now I had pneumonia 11 times in 14 months, my Doc now is an Immunologist BUT he specializes in Pulmunology thats why I love him he is a good Christian man, his wife is the head nurse, he treats all those precious children with cystic fibrosis..breaks my heart sometimes when I am in the office watching them struggle just to breathe.

Now one thought is that I AM always sicker in the winter but it sure seems like I am staying pretty sick with pneumonia, bronchitis, sinus infections since I have started the Remicade even though it is helping the joint pain part of it...when do you decide its doing more harm than good...now Im really getting depressed..lol

Please continue to keep me in your prayers.

Hugs,

Lisa

Hi Cindy,

Yes I am starting to think there could be a bigger picture here and I dont like what I am seeing....Trudi mentioned that I could have viral pneumonia since it takes so many antibiotics and so long, I was REALLY shocked today to see the films..Im not a Doc or a tech and I have had it enough that when Tori and I looked at them in the car I was like OMGosh I still have pneumonia...

I also REALLY HATE the feeling that I have to continue to push my health to the limit because of a stupid insurance deductible..what does that tell you about our insurance system and IM COVERED on 2 INSURANCES BCBS AND Medicare..that is the really sad part.

Well I will go back a week from thursday IF he does not want me to do another round, this would be the 3rd and push the deductible back another 2 or 3 weeks.

Thanks for your support and please keep the prayers coming.

Hugs,

Lisa

Hi Lisa...I just popped in to check on you, I know how sick you've been sweetie, you know you're in my heart and in my prayers, if you need to talk, call me...big hugs & much love, my friend...

Lisa, you poor thing. I'm glad you're listening to the doctor. Man, I hope this pneumonia clears up soon. You've been sick far too frequently!!!!

It will all work out, I know. Just wish you weren't having to go through this.

Warm hugs,

Oh dear Lisa, I am so sorry to read that you are so ill with pneumonia. I know how scary it must be to have had to put off your infusion and face the pain ramping up again on you... but yay for your wise and caring doctor and his insistence on the chest xray -- thank goodness he is looking after you so well!

I thank GOODNESS that it wasn't a heart issue but very worried that your lungs are still causing you such grave problems. Pneumonia can be terribly serious and I wish with all my heart that you weren't in that category of people. I hope you keep getting all the rest and nutrition and meds that you need and that it will clear for you soon.

Your insurance woes and deductible worries must be adding a ton of stress, which is just brutal to imagine when you are already feeling so poorly - just try to concentrate on getting yourself well and worry about the rest when you are well enough to worry.

Push that infusion out 10 days or 20 or whatever it takes but make absolutely sure that you are feeling bright and chipper again before you have it.

Wishing (((you))) the fastest recovery from this and MUCH healthier days ahead!
with love,
mig

Lisa,
I won't be sneding any sniffed on hanky, but I will continue to pray for your good health!
I am a bit stiff from scoopping snow, but doing ok.
agap'e

Well just an update....seems like round 2 is here..I know if I run a fever of any kind the Dr. is going to make me go to the hospital...so not real happy right now.

Been on antibiotics for 10 days now and seems like no relief in sight..tried looking up viral pneumonia but not sure what they do for someone with no immune system.

I have fully resolved myslef to the fact that I will die one day from pneumonia...just didn't want it to be this time....once Ethan turns 18 and my kids are grown then I would go but I wish they could figre something to help me...my biggest fear is we wont be able to keep my immne system up so I wont get Remicade so I will be sitting in a wheelchair unable to walk, with my oxygen tank because of constant pneumonia all at the old age of 47 what the frick is wrong with me???

Anyone have any ideas on whats going on? Why do me and pneumonia seem to be best friends?

Im just so tired....

Hey lady,

I have had pneumonia several times since dx and I have some theories.

1)ribs are trying to fuse so I don't breathe as deeply as I used to, and I don't exercise to the point of breathing deeply either. I think deeply breathing kind of busts the junk out of the recesses of your lungs.

2)i've been told, and thus made it a habit to sleep on my back with no pillow. so when I get even a tiny cold, where does all the gunk run?? into my lungs....all night long.

3)i MUST take a muscle relaxer to sleep, so when I do get a cough/cold I don't really cough during my sleep and so again all the gunk runs into my lungs.

This year I got a cold and MIRACULOUSLY it did NOT turn into pneumonia. The only thing i did differently was to drink a cocktail made of 1 airborne tablet, 2 emergenC packs, and 2000mg scoup of vit c for a total of 5000mg of C. I drank this am and pm and the cold just barely going away and I still don't have gurgly lungs...yay!

so if you're still feeling pizzy and want to do some late night reading, go to the doctoryourself.com website and read about all the crap/bacterial and otherwise they have killed with vitamin C.
Maybe it would help you?? I hope you get feeling better. I got a sense of how serious pneumonia was just by the look on my docs face when I got it the 3rd time.

Hugs to you and lots of healing vibes coming your way!

-Donette

LisaMom:

Don't think we are not noticing that you are in a bad place right now!

After Ethan gets to be 18, may have to just arrange for Rascal Flatts AND Brooks & Dunn to come over to your house and cheer you up!!

Remember, I got connections in the biz!!

DISCLAIMER:

offer may not be applicable in all states, including ones where the wind comes sweeping down the plains, waving wheat, (why in the world it would want to do that anyway?), and in the event that someone is making up the part about actually knowing or having any influence to any Country & Western music stars, substitutions may be permitted. For instance, instead of handsome geetar-playin' cowboys, possibly it could be a just an equally handsome accordion-playin' shirtless Englishman. Or white dogs with off-pitch barking. But in any case, you DON'T want to miss it!!!!