Unfortunately I got bad news:(

Hello everyone:)so bad news. …MRI confirms the labrum in my right hip is torn and I’m almost bone on bone in both hips(my hips only started being problematic in May of this year) .Dr savage wants me to be seen by John Hopkins University ASAP for a second opinion on my overlapping cartilage disease. She said she’s never see or heard of a patient having it as severe and aggressive as mine is, it’s totally rare:( and I’m looking into grants for the trip. She’s keeping me on benlysta for a while longer but will mostly likely have to do ritoxin??chemotherapy too. She also confirmed polyconditis, the top of my ear clearly shows it. sending me to the ENT STAT because it’s probably causing my inner ear and throat swelling and pain .she said it’s can be very dangerous because since the cartilage in my vocal cords and trachea are being affected my esophagus can collapse and I will suffocate:(

PRAYING for you and sending you gentle HUGS and BLESSINGS...........hang in there :)

Dawn, I'm so sad you got tough news. You care team seems to be on the ball though, sharp, competent, and helping you get the help you need. What a blessing!

Sending healing thoughts and warm hugs your way,

Louise

You are in my thoughts and prayers....

So sad to hear your news. But you seem to have a good medical team and and strength to get through this. I will keep you in my thoughts and prayers!

I am so sorry that you have all this to deal with but what a great doctor you have. You are in my prayers and gentle hugs to you.

so sorry to hear that,im sending prayers your way,get better soon,and keep us posted

Wow!! That’s a lot to take in!! So sorry to hear it :frowning: If you don’t mind me asking where are you coming from to try and get to baltimore?? Thoughts and prayers with you

Hi

I'm so sorry about your bad news I rayed for you last night. How far away is Johns Hopkins from you.?

Hugs and kisses for you

Cindy

You will be in my prayers. So sorry to hear this.

Creekbank

Praying for you and your family, Bless You.

So sorry to hear. If it makes anything better I just finished 6 weeks of Rutaxin it isn’t so bad. It just takes for ever. If it works it makes me feel much better. It’s my second round. Good luck with your ENT mine is pretty painful and not much they can do. Good luck!! :slight_smile:

I'd like to add my thoughts & well wishes to all expressed so far. Good Luck. Take care. Travel Safe. Kaz xo

Thanks to you all for my well wishes and prayers! I’m trying to absorb all of this but it hasn’t set in yet…think I’m more upset for my daughter family and friends…its very hard for me to see their fear and sadness throughout this terrible ordeal .I just want to comfort everyone because I love them but I think its also my way of avoiding the reality of my situation. .I’m not avoiding it on purpose it’s just all so serial to me .today some of my dearest friends came over to visit:)they brought me flowers, yummy treats, and delicious smelling candles , it was nice:)some family will be by tomorrow and more friends later in the week so I’m blessed to be surrounded by love. My ex husband’s mother and father gave my fiance and I a check to help with our travel expenses to Johns Hopkins today and my brother and sister in law offered to cover the rest, I’m sooooo thankful! We live in ft Lauderdale, Florida so it’s a long drive. .I would rather fly but my fiance is terrified lol…I think a road trip will be nice for me. I have gotten so sick so quickly and never have fun anymore. I love the look and feel of autumn and a chance of scenery will be good for my soul. .I’m accepting correspondence from Johns Hopkins with in the next couple of weeks and will let you know when I do. .In the meantime I’ll have my port put in October 7th and ENT October 15th. .thanks again!!!xoxoxo

Oh what wonderful family and friends that you have. It is so nice to read that people are there helping you thru a terrible situation and you have lots of prayers and healing thoughts coming from this wonderful group! Hugs!

So sorry to hear! Praying for you. God still answers pray! Hugs!

My prayers are with you. Please keep us posted!

Hi

What a wonderful family and friends you have, I know that helps,

Hugs

Cindy

Hello, sorry to hear that you r going through this, hope you get well soon! My prayers go out to you, feel better soon…Beverly L.

Prayers for comfort and healing are with you!

Much love,

Lori