Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hello!!!

Just wanted to touch base and fill you in. Things have been hard but we are hanging in.

I had 5 kidney surgeries before a total kidney reconstruction instead of removal. I am now having more problems and it worse than before surgery. I have been having strokes in my left eye and getting an injection in it every 4 weeks. It is much better. I am so thankful for that. I do have Glaucoma.

My pain is very severe. A couple of days ago my pain was so bad that I couldn't wear earrings because my earlobes hurt. :crazy

I am taking Benlysta infusions for the Lupus. I have been on Prednisone off and on but nothing in particular for the AS or RA. Just trying to take care of pain. I am not a candidate for the extensive surgery it would take.

My husband's RA is pretty severe also. He hasn't been able to do much at home for a couple of years and I got to where I just couldn't handle it either. We downsized to a nice apt. in an independent living facility and no longer have to worry about what the earthquakes are doing to the foundation or whether the storms are going to destroy every thing and I don't have to look for a handy man. I just call maintenance!

They clean it weekly and have good restaurant type dining. All utilities including cable and Wi-Fi are included so the stress; physically and mentally is much lessened

We have a beautiful little great grand daughter so that makes two Greats! and they live only a couple of miles away.

Well, that it what is going on with me. I hope to be checking in more and catch up with each of you dear friends
Love to you all.

Kidneys are a touchy thing. I hope you get feeling better- I went in for a Kidney biopsy a few weeks ago. Biopsy was negative. but what should have been a 3 to 4 hour stay ended up being 5 days in the Hospital. Hit a major artery and almost bled to death. After several cat scans and two Angigrams. the bleeding was stoped. 15 hrs of transfusions. No fun good news is I kept the Kidney. Almost back to normal now. I wish you and your husband the best. Smed

Thanks. That is terrible about your kidney. I am glad you are doing better. Makes me dread another procedure!
Good to talk to you.

I check in here almost every day. So great to hear from you. Grandkids are the best, God's reward for raising your kids.
ETTE
Darrel

Possi - lovely hearing from you. Really missed you on the forums. Sounds like you and yr husband are blown home with the move, good job.
Whenever I am in my garden or we have a garden club meeting, I think of you <smile> Admire yr sheer grit.
Sincere best wishes - BIG (((HHUGS)))
Molly - Keeping on, Keeping on - as we all do, innit

Congrats on the grands - good job

Possi,

Good to hear from you, wish circumstances were better. Prayers that things improve.

Tim

Just sending some love.

Love and hugs,

I’m really sorry to hear all this, Possi. You are one of the strongest people I know.

Hi Joyce- You have been through a lot since we have lost spoken. Sorry I lost touch for so long. I can’t imagine going through five surgeries and injections in the eye, it all sounds too painful. Have you been on the Benlysta a long time and does it help the pain and is it well tolerated? I am glad you and hubby are in a smaller place so you have less work to do now and you can focus on your health and spending time with family. Happy to hear you have a new great grand daughter in the family.

Shari

Hello Possi:

Can you please describe to me in what way your earlobes hurt and if it is related to AS?

My left-side facial pain is almost constant. I have burning in my left temple, cheek, around my ear and eye socket almost constantly; and on occasion even the left ear burns. One rheumatologist told me that some patients have "allergy-like" symptoms in their head.

For me, I wonder if this is AS or actually due to a chronic and growing infection I believe that was triggered in a scuba accident four years ago. It could be just a serious allergy triggered by the scuba accident.

I believe that the location of AS symptoms are driven by its closeness to lymph vessels that are active with microbe containment/destruction.

If there is a lot of immune system activity in the:
1) lungs then the thorax will mainly be effected.
2) colon then the sacrum and lumbar will be effected.
3) head (sinuses,ears,etc) then the base of the skull and neck will be effected.

Maybe there is an arthritis that has symptoms of AS but is more like reactive arthritis. And hence, perhaps there is a type of AS that is not driven by gut bacteria.

In my case I can connect environmental exposures or illness to effects in particular spine locations for almost the past thirty years.

Just my 14 cents of observations.

Perhaps this should be under the threads of "Alternative AS theories" or "AS symptoms in a nutshell"