AS and Disney-yikes
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 the meds)--methotrexate is Sunday night and yes, the hangover was Monday--at Animal Kingdom...a little headache, a tad-bit of nausea, but EXHAUSTED! How can I walk around so tired? My legs felt like each were wrapped in that blanket they put on you when you have your teeth x-rayed at the dentist! So, my poor (sweet) sister and my sweet Laney-lou-pushed me around in a wheel chair. YEP! Had to be pushed around in a wheel chair. I was feeling at an all time low at this point--don't try and understand, only if you've been here would you know what I'm talking about. At this point I'm also feeling really-REALLY-guilty that Tonya is having to push me around! Needless to say, it had to be done. It was the only way I'd make it. Tues and Wed-I was ok. There was enough resting time at the parks to walk these 2 days.
BUT--super-mom kicks in. Wednesday night we leave the park and then the "big" kids want to head back to Animal Kingdom (it's been all day and it's 9:00). I can do this! I'll take them! So, we get to AK around 10 (stays open to 11) and Laney and Carter have 1 thing on their mind-Mount Everest! AT THE BACK OF THE PARK! I'm sooo holding them up..I say run on, I'll catch up. I pass a bathroom, make a stop (can't pass one without stopping!) and I'm coming out thinking/praying Lord please help me make it. The pain that has taken over my body at this point was CRAZY! I look straight ahead and I see a bench and a WHEELCHAIR! Let me back-up, it's 10:00pm...park closes at 11:00...there's nobody around!!!! A BENCH AND WHEELCHAIR! Did this person walk all the way to the front? Where did this chair come from. So, I park myself on the bench...waiting...waiting..nobody comes for the chair. THANK YOU LORD for answering my prayer. I didn't pray for a chair, but I did call out "how was I going to make it". That's how! He provided this chair for me. So, I used it as a walker and made it a few more steps to the ride. The kids rode non-stop till closing! And then Laney pushed me all the way to the bus! Our last day was going to be spent at Epcot-whew-that's a LOT of walking! No need to even try and no need for anyone to exhaust themselves pushing me so it was an electric scooter for me. Yes, not to happy about it...at times I think it's giving in to the disease..at least that's what my mind keeps saying, but I know it's me. It's what I must do to not give in! I didn't stay home! We had a wonderful time and yes, very exhausting and painful--thing is I didn't stay home and think, I can't make it. Disney is too big. My body won't allow this trip. I found ways to make it work--a wheel chair, a shady bench a wonderful show. ASers don't give up and stay home and think I can't. Think instead, how can I make this work!
AS you may have my body, but you will not have ME!
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 the meds)--methotrexate is Sunday night and yes, the hangover was Monday--at Animal Kingdom...a little headache, a tad-bit of nausea, but EXHAUSTED! How can I walk around so tired? My legs felt like each were wrapped in that blanket they put on you when you have your teeth x-rayed at the dentist! So, my poor (sweet) sister and my sweet Laney-lou-pushed me around in a wheel chair. YEP! Had to be pushed around in a wheel chair. I was feeling at an all time low at this point--don't try and understand, only if you've been here would you know what I'm talking about. At this point I'm also feeling really-REALLY-guilty that Tonya is having to push me around! Needless to say, it had to be done. It was the only way I'd make it. Tues and Wed-I was ok. There was enough resting time at the parks to walk these 2 days.
BUT--super-mom kicks in. Wednesday night we leave the park and then the "big" kids want to head back to Animal Kingdom (it's been all day and it's 9:00). I can do this! I'll take them! So, we get to AK around 10 (stays open to 11) and Laney and Carter have 1 thing on their mind-Mount Everest! AT THE BACK OF THE PARK! I'm sooo holding them up..I say run on, I'll catch up. I pass a bathroom, make a stop (can't pass one without stopping!) and I'm coming out thinking/praying Lord please help me make it. The pain that has taken over my body at this point was CRAZY! I look straight ahead and I see a bench and a WHEELCHAIR! Let me back-up, it's 10:00pm...park closes at 11:00...there's nobody around!!!! A BENCH AND WHEELCHAIR! Did this person walk all the way to the front? Where did this chair come from. So, I park myself on the bench...waiting...waiting..nobody comes for the chair. THANK YOU LORD for answering my prayer. I didn't pray for a chair, but I did call out "how was I going to make it". That's how! He provided this chair for me. So, I used it as a walker and made it a few more steps to the ride. The kids rode non-stop till closing! And then Laney pushed me all the way to the bus! Our last day was going to be spent at Epcot-whew-that's a LOT of walking! No need to even try and no need for anyone to exhaust themselves pushing me so it was an electric scooter for me. Yes, not to happy about it...at times I think it's giving in to the disease..at least that's what my mind keeps saying, but I know it's me. It's what I must do to not give in! I didn't stay home! We had a wonderful time and yes, very exhausting and painful--thing is I didn't stay home and think, I can't make it. Disney is too big. My body won't allow this trip. I found ways to make it work--a wheel chair, a shady bench a wonderful show. ASers don't give up and stay home and think I can't. Think instead, how can I make this work!
AS you may have my body, but you will not have ME!
Hi Melonie,
ReplyDeleteJust wanted to let you know that I too have been pushed around an amusement park in a wheelchair. Wow - didn't think that was ever something I'd admit in print. It was a very low point for me - the worst of times right before my diagnosis of AS. After a long day - I had to be presentable for my cousins wedding... I was probably in my worst pain ever through that ceremony. I am wishing you great success on Remicade - it is what finally gave me a lot of relief from this horrible disease. Push for enough mg/kg. What's the point if you don't have the high dose. Oh gosh I hope it helps you!
Best,
Jenna
Hi Meloni,
ReplyDeleteI've been reading back from your most recent post tonight, and I just needed to say THANK YOU for writing these posts. I finally (after a four month flare up last year and going through hell the last seven months) got a diagnosis of "most likely AS but possibly undifferentiated spondyloarthropathy" today. I've been on sulfasalazine for the last six weeks and it did help with my peripheral joint pain (thank God for a dull ache instead of feeling like there was a vise around my knees!), but my spinal/SI pain didn't change at all. Today my Rheumy took me seriously for the first time after seeing the results of my lumbar and pelvic MRIs, and I start on Enbrel on Friday.
Anyway...I am rambling, so I will make the rest of this short. I understand EVERYTHING you said in this post, and in later ones. I live near Disney, and have friends ask me to go all the time. It is so hard knowing that you may need to ask someone (although my husband always does it willingly) to push you in a chair, or that you may hold people back by walking slowly from the pain.
Anyway...I hope this most recent Remicade treatment was the magic one, and that you are finally feeling some relief! As much as I would never wish any of this on anyone else, it is definitely nice knowing that there is someone out there who understands.