Ankylosing spondylitis wife, mom, and grandmom!

Thought I'd bring the "old" lap top and blog while I sit here these 2 1/2 hours getting this 2nd remicade infusion! When I say old, I do mean I probably have the biggest lap top in here and thinking that if I'm going to need monthly infusions I need an ipad! Wonder if insurance would cover it? bahaaaaaaaaaaa Speaking of insurance, we are getting a new policy come April 1! Soooo worried about that one! I already have to fight to get NEEDED care! FYI--you-YOU--are your best advocate! Fight for what's yours!! Now, back to this infusion I will probably have a huge bruise on my hand-NOT because of the IV, but because of the 15 min of thumping to find a vein, which she couldn't! So, it's in the bend of my arm..can you say OUCH! Haven't felt any relief from the first infusion but sooo hoping that I will after this one! So getting an IV in the bend of your arm makes for hard typing! Doing the 1 finger bit right now! So this blog will need to be shor...

First remicade infusion was last Thursday. Saying I was all ready, would be a lie. I was nervous about the first time for this new medication. While you read or talk with folks about side effects they may have had all meds are different for all people! I was so thankful that Lang was going with me. We get there and I'm about to head in when we get told, Lang can't come back with me-wth! So, I've got to do this alone and he's got to sit in the waiting area for 2 1/2 hours---really???!!! So, once back in the room, the nurse proceeds to tell me the reason that Lang is not allowed to come in is because she is discussing "health" records/procedures and it's confidential. OK--well, there's 3 of us in the room getting procedures--me and 2 men who have gastro diseases and are on remicade--so I can hear, but not my husband?! That's really kind of stupid! The procedure went well--no side effects other than being extremely tired. It took 2 1/2 hours a...

I can't believe it's been a month since my last post?! I have been a "bit" busy and a LOT in pain. Since I last wrote, I mentioned that my rheumy informed me that I have an aggressive form of AS (again still not the words I want to hear-I wish she'd take them back). Currently, I'm not on anything but methotrexate (and folic acid, b-12, vitamin d-blah-blah). I've already been through humira and enbrel but they didn't do what doc thought needed to be done, so Thursday I go to the remicade IV infusion. While I am looking forward to hopefully having a medication that works, I'm a bit "leary" as to how it will make me feel and how it will affect my body. But, let's just say the pain that I'm experiencing is "out the wazoo" right now! For winter break me and my sis took our kids to Disney. Have any of you been? Have you been with AS???? WOW! So, you still have to take all your meds with you (had a suitcase just for th...