Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Infusion over again....

Thanks James. I have had some hard times earlier with the infusions but I guess my body is adjusting. I know it is helping with some joints. I just expected too much. Thought I was going to be pain free and doing all that Kat does but I have to remember I have a lot of years on her too. ) Have to stop comparing myself to others and just do the best I can.

I appreciate the support so much. It really keeps me going.

I am not familiar with the Boniva. Might tell me more about it when possible.

Thanks for thinking of me.

Have a great weekend.

Blessings.
Possi

possi, boniva is for osteoporosis i take it 1 pill amonth my doc didnt want me to do the shot because it would have side effects to my other meds that im on so i have a boniva day like the commercial says....LOL.......oak

Hi Possi,
It's for osteoporosis. The reason I get the injection administered by the infusion department, is because I have esophagus trouble from a repaired paraesophageal hiatal hernia, and the throat problems that I am being seen for now. I can not take oral osteo meds anymore, which have the special requirements we have to do before and after taking them.

For me it's either this or Forteo, which is daily injections. I tried to keep taking Fosamax, but I had to keep stopping it because of my throat. It was stop and go the whole time with that. I never stopped my calcium pills though so I wasn't stopping treatment entirely.

My Remicade lasted two weeks this time around, which is much less than a couple of years back. I told my doc about it and he said he'll work with me on the effectiveness. I don't know if it's because I am not taking Methotrexate this time, or if it's something else not right, or maybe they gave me a dud lol. The side effects from the infusions...they are there like the last time. I'm back to taking my Methadone daily at night so I can be able to move since I am having some trouble with NSAID's. Yep walking has been decreasing dramatically again, but at least the methadone helps, and helps knock me out too lol.

Been thinking about getting a motorized wheelchair. My neighbor still says I need it because he sees I can't get around, and he knows we have to walk a distance to our parking spot. Landlord said it too. My other neighbor's get mad if we try to park closer because I'm not a senior, and they also believe in seniority. One even tried to get me evicted last year because I was in 'her spot' thinking we did it on purpose. It didn't work, but I ended up having to park in the corner of the lot again. No parking assignments here, just people making their claims on spaces. Anyways I'm hoping it will be easier on my back than this manual one I have. I wish there was a way to find out first, without having a salesman come down and do his routine. But then I'll have trouble getting it in the van, this lightweight manual one is bad enough, even for Brenda. hmm...I don't know... just thinking aloud again....

Well, it's good to hear your results are better, even though they weren't as much as you hoped for. I'm sure it will get better in time. I'm hoping it will. You deserve it.
Have a bright day,
James.

Hi Joyce,
I hope this infusion does something for you. It's so much to go through. I'm thinking of you, hugs Wanda

James,

You will have problems with a mobility chair or scooter without some means of hauling it. Check with Bruno Vehicle Lifts for lifts that can be screwed down to your van if you have one. Some can go in a car trunk. Depends on your vehicle or your car. They are online.

Always check ebay first as we've seen them there and got ours there. I have a Van.

If you can haul a small trailor it will do it also as long as the back lays down to be a ramp. We have found that portable ramps are a fuss and heavy for me to use. Bruno's will pick up electric wheelchairs as well.

We got a sweet deal on ebay for a mobility pride chair as well. But then if Medicare is available to you, what you pay out of pocket it maybe equal. Rascal is more powerful to go up hills or over threshholds. If you need outside help it is important to have power.

I was getting the Boniva infusions and had to give them up. Not to be discouraging but one of the side affects was jaw problems and my jaw was getting bad. My PCP caught it.

I see your plate had become more full. May you get some relief soon. I'm so sorry you have so much going on.

Each day has it's badness but has hope too and I hope your days will be better.

Coyote

Honey, even if you don't do the trek, please keep planning the trip. Cuzco is a beautiful city to walk in and you can take the bus to Machu Picchu. Well, from Cuzco it would be a bus, a train then another bus.

I know this is a goal you can attain, Joyce. You're one hell of a AS kicker, lady.

As for inspiration, you all here, and you in particular Joyce, were my inspiration. When things got rough (whether in fundraising or on the trek) it was KA that I thought of and the amazing people here. And you, Joyce, knowing that you were counting on me and pulling for me. Inspiration works best when it goes both ways. And in this case, it does.

I'm pulling for you every step of the way.

Warm hugs,

Hi,
We have a minivan - Dodge Grand Caravan, our only transportation. I have seen the power lifts and power hoists they use for vans but I figured that to be very expensive, unless these are also covered by insurance. Most people where I live leave their power chairs and scooters out in the parking lot, but then I aways wonder how they get around after they get to where they are going. I don't want to leave mine outside unattended because I had too many things taken from me lol. I do have medicare so that's going to help out a lot.

This isn't something I wanted to jump into right away, But I think I am going to have to start looking around soon.

I can trailer but I can no longer drive. My wife has a hard enough time backing up... (Sorry Brenda).

Thanks for the advice,
I will check this all out,
Take care,
James.