Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Well, you really missed something yesterday..

Thanks Wendy. I have missed you too. I will just make an effort to be here more. I know my pain is because of cutting the Prednisone. My joints are just really a mess.

I appreciate you and your support so much.

How are you feeling? Give me an email when you have time.

Hugs.
Possi

Hi sweet Bridget,

Like you, I am so scared of falling. I have fallen so much in the past 2 years. I am very thankful that I have strong bones or I would have been in a mess.

We are to have 50 mph wind today ahead of a front. It is coming in from the West so it has probably past you. Did you get storms?

How are you feeling? and your husband? The baby is so precious.
I know you are really enjoying her.

Hope you have a great weekend. These times with the fronts and the changes really contribute to pain. We both have that trouble but the cold fronts bother him more and the wet fronts bother me more.

Hugs and Blessings.
Possi

Just a hug, my dear, to help with your day.

Love,

Thank you Kat. I got x-rays done yesteray of my knees and my wrist. It has been long enough that it should be better but it is just not. I hope it just means bracing and not "cutting".

I am rather bummed. My PT told me yesterday that she has done all she can for me, that she doesn't know anything else to do. I guess I won't go back. I have an appt. but might as well cancel it if she doesn't know what to do. I had so much trouble sleeping and was up at 5:00. I feel like everyone has given up on me.

The drs said since I can't tolerate the Biologics, TNF's and can't have the Pred unless it is an emergency that all they could do is pain management and wanted me to go to Debbie (PT).
I have gone for 2 1/2 years. She is wonderful.

I just feel so sad that I don't have any place else to go. Well, just thought then....This may be when I need to "get and stay" really serious with the diet. I give up on it pretty quick.

I appreciate you.

Hugs.
Possi

Hey Possi darling;
yes we have had storms . . . and storms . . . it has snowed at least once a week since Halloween. Seriously! the last 3 days were very warm and nice, so I planted my gladioli, and peas and carrots and a maximillian sunflower (yes, I nearly died from the pain, but ohhhhh how can you resist the first warm spring days???) and I got to garden with my daughter for the first time - what a WONDERFUL feeling! She's toddling around now, so I took her out with me, and she went out to the corral and I got pictures of her and the horse, I'll try to get one of them on my sig here soon.

So today it's really really windy again, and another storm is coming in . . . gonna snow AGAIN. Poor horseyface, she's already shedding like mad so I'm gonna put her blanket on her for this storm. If I can move enough to get out there . . . lol

Are you recovering well from the Treadmill Incident? *warm hugs*


Bridge

Hi sweet Bridget.

Your storm this time is thunderstorms, hail and possible tornadoes by the time it is getting into Oklahoma. Yikes. I like to hear the rumbling thunder but not the booming thunder with the bad wind and hail.

You are right about wanting outside as soon as we have a warm day. I know you are enjoying this time with your baby. Teaching her about planting already. That is so neat. Enjoy. They grow up so fast.

My fall has been a real mess. I found out today that I have a fractured wrist. I was most worried about my knee. It is not broken but it is so swollen still after over 3 weeks and hurts so bad. The x-ray showed a lot of fluid in it and some other words that I don't really remember. I just know it the knee cap is still in one piece. :o) They are going to give it another week and if it is not better, do an MRI and also MRI the wrist and maybe an elbow. More braces today!

Also, I just was outside for maybe 15 minutes this a.m. and then was in the Rheumatologists office because of Lupus Photosensitivity. You should see my feet and legs. I have never had anything like this. I saw several different people this a.m. and I got some new orders. My feet and legs are just burning and they look horrible. I had on sandles and crops but my legs are burned from coming home from PT in gym shorts yesterday.

Hide a lot of eggs. I know you will have a fun Easter.

Love you.
Possi

Hi Joyce, I guess if pain meds don't like us then, we will have to depend on the hugs,love and prayers, we receive here at kickAS. So I am sending to you millions and millions of hugs, love and prayers, that you get relief from the pain, so you can get out in your garden.

Hugs, love and prayers are going your way.

Gerri

Joyce, dear friend, just wanted to pop in here and send you a hug. I know where you are at, at this point, "Bummed" I too am at that same place, no Biologics, no NSAIDS, Pred only in emergency, PT making things worse, everyone has given up on me too. I guess I will be thankful for Pain management. You and I are on the same pain management too.
I start everyday with a prayer and possitive thought so today will be, the pain management is still working and I can go outside and enjoy a beautiful sunny warm day. All we had was snow and ice the last week and the next 5 days are to be sunny and 70's
By the way, what did they do for your fractured wrist?
How's your hubby's knee?

Cindy

Thank you both. I don't know what I would do without you.
I am just bracing my wrist. It didn't look bad in the x-ray but they may do an MRI in another week or so if it doesn't get better. My knee is so painful; much more so than the wrist. They said it was (forgot the word, you will know) full of fluid and it has RA in it and some OA with the bone spurs, etc. They said they will probably MRI it next week because it is so swollen and so painful and that x-rays don't show up tears, etc.
We put a brace on it also.

I ended up in the dr's office for quite a while yesterday p.m.
I went outside in my sandals for possibly 10 minutes and I was back in the house for a while and kicked them off to rest a while and my husband said with this scared voice, "What in the world happened to your feet?" and I looked at them and they are terrible. They are burned so bad but it didn't/doesn't look like a typical burn. The dr.s said I had developed Lupus Photosensitivity and that it was a bad Lupus sun reaction/burn and that it can happen to people in 2-3 minutes of stepping out.
They said to keep the sunscreen slathered on and covered up and out of the sun. My legs are burned to and I had worn shorts to PT getting in the car in the garage, getting out and going in her office and then back to the car and out of the car in the garage. She had taped my knee and then I had gotten x-rays and it is white where the tape was and where my shorts came to and the rest of my legs are so red. I asked if it was from the x-rays and they said "no" but I still wonder. Does that happen Cindy? A reaction to x-rays? Debbie had also used the laser on me a lot before that. I don't know what you get from the cold laser. I just know that they can't use it close to your eyes.

I have to get started. I got up at 7:00, took pills and it is 10:15 and I think I can get started. I am thankful for the day but some of the days are really hard. I am so glad your pain management is working. I never have a day that I feel like it works. It takes the edge off except for walking. I have these huge arthritic knots at the base of my toes and they hurt so bad to walk. I don't know what to do about that yet. I will bring that up with him Tuesday. I live at that office. I am thankful for them. I didn't have an appt. yesterday. I called and told the receptionist what was going on and she put me on hold and came back and told me to come on over and they wouldn't give me an appt., just put me in a room and check me out as they could around their appts. They apologized so much for the time involved and I just told them how thankful I was that they checked me out before a long weekend because they are closed today.

Got to try to walk to the kitchen and the shower. :o)

Love you both.

Possi


Happy Easter!!

Hi Possi,

I've read about Lupus sun sensitivity before - I'll bet all your burns are due to that. It means you have to be shielded from the sun at all times. Have you ever suffered from the lupus butterfly rash on your face? I believe that's another indication of sun sensitivity.

Every time I read your posts, I feel in despair for you and so wish I could wave a magic wand over you. Your doctors and PT people must be horrified at what you're going through. I hope they're all lovely to you and make a decent fuss of you. You deserve it.

I'm home today - I'll send you an email in a while. Maybe help you cheer your day!