Upset :(

So I have degenerative disc disease in my spine already along with an extra unbroken-sacral joint. I had one surgery in 2009. They did a double laminectyomy, double discectomy and decompression. I need a fusion (double level) which I’ve been putting off. I REALLY don’t want it until I get to the point that I’m in so much pain I just don’t care anymore. I have arthritis in my hands, feet, spine, knees, and now I think my shoulders. Chondramalacia patella in my knee along with a rod and 1 screw of the original 3 in my right tibia. To say I AM IN CONSTANT PAIN …is an understatement.

I’ve been having pain and bad spasms in a “new” place on my spine. Part of the thoracic. I mentioned it to my primary who sent me for an X-ray (which I put off almost until the script expired). I went Friday and picked up a copy of the report today. It says that there is disc space narrowing (yeah I’m not new to that…expected), scoliotic curvature (WHAT??) and osteophytosis (seriously??).

I’m already going back to my knee doc on Monday cuz my it keeps giving out again. Already had the synvisc injection. He’s gonna wanna “go in” and “clean it out”. On that mri report, it says that there is a bony island. I looked that up…wrong move cause all I got was info on bone tumors.

I’m falling apart…literally!! I woke up crying this morn. Just because, I guess. I’m tired.

My 14 yo daughter rides and competes horses. I go to the barn with her. I just love the animals soo much…they never judge…they speak quietly to your soul. That’s why I love my dogs more than half the people I know. (Zeusy boy!!.. For ann) I haven’t told ANYONE this…but I’m afraid. I’m soo scared I won’t be able to do these things with her soon. Her and I are soooo close. I’m afraid I will end up in a wheelchair soon or housebound. My family has been thru soo much stress and my health issues feel like an afterthought ya know? She would be devastated without me so I should take better care of myself. I’m so miserable though so I enjoy my cigarette as I write this (ducking as you throw tomatoes at me… I know please don’t lecture me about it).

My husband is out visiting a friend from work. I was invited but too tired and in too much pain to do my hair etc this morn so I backed out which only depresses me more that he is out and I am home.

I wish I could have one dr to deal with all of my issues and make me better. I’m sorry for the soapbox rant. I’m just really down right now. I’m deteriorating physically and mentally.

Hey, you are not alone. I don’t have any recommendations for cures but am with you on the frustrations, fear of future isolations from family activities, unable to do or be all I want to be and feeling like a useless blob of hot mess. I think this is hardest part of Lupus the unexpected and the inconvenience. Pain is pretty bad too!

One thing that helps me during these times of frustrations is to realize so many other people deal with challenges and learn to rise above it and move on with their life in a positive contributing way. Talk to your family and ask how your role as wife and mother is changing and find out what are some areas that you can let go of feeling like you have to physically be at places but maybe your support and companionship can happen another way ( build a scrapbook of your daughters activities and accomplishments, have date night with husband at home watching movie after candlelight dinner so you don 't have to get all dolled up when you don’t have energy ).
Even without Lupus our roles as mothers and wives were going to change as time goes on, our disease just speeds that up.
My faith in God’s promises really does carry me thru those dark days. Seek spiritual strength to endure each day: 2 Corinthians 4:7-9
But we have this treasure in jars of clay to show that this all- surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.

Hi, Jend when I had my fussion in 2004 it gave me back my life, the spasms stopped and I was able to work alittle just part time but atleast that was progress for me. Don't be affraid of the surgeries and the meds, they can change your life.

Thank you all

Thank you Ann… Never too harsh! Just what I needed actually. I love you… U are a blessing here. Always words of kindness and wisdom.

Ann is right, has to be the pain making you think badly of your future! Your daughter sounds wonderful and I love horses too!

Enjoy every minute of them both and Zues, he is such a handsome boy!! If you need a wheelchair so be it they have come a long way. Just had a friend with polio pass from a fall, but she spent most of her 70 years in a wheelchair. She was only supposed to make it to 30! I don't think you will need one for a long time though. If you need a ciggie to make you feel better...just do it!! No judgement here! Whatever works!

Hugs,

Geneva

Thank you for caring Ann. I actually had an injection in my knee yesterday. It’s super sore and achey today. Going to talk to primary about that X-ray today.

I’m also going to go to my psychiatrist today. I’m super weepy.I’m crying at everything and nothing. I’m wondering if it’s the steroids. They were increased a few weeks ago. We’ll see what he says.

Thank you for thinking of me.