So benlysta is not helping , not even with cellcept. ..This cartilage disease has spread like wild fire and it has no prejudice against any part of my body... I've turned a corner with my diseases and I can no longer bounce back, I was able to have a decent several days here and there before. .I'm always in a state of flare but 2 months ago a had a very serious one.. I always know when something is brewing because my hair falls out heavily, my lungs and strum inflame and my neurological symptoms are doubled. ..This time was different because I began to have cardiac symptoms in the form of violent, excruciating hear palpitations...my entire chest was affected and I had bad wheezing and shortness of breath. .it took over a week to get my breathing under control between my pulmonalogist, cardiologists,rheumatologist and primary. .During the flare the labrum in my right hip tore... All the other hard cartilage that was torn and frayed before tore more and I suffered more soft cartilage loss between the bones in my hips and shoulders...it's just so hard to be in such excruciating pain all the time!! So now I have this power port in my chest ...it's totally under my skin but I have a huge lump under my right collar bone , I hate it:( I just had surgery for it on Monday so im hoping it'll get flatter but I can't imagine where all this balled up tubing will go, im a tiny women with a tiny chest lol ...my rheumatologist will be putting on chemotherapy soon since I've failed EVER medical intervention to date. ..think I'm just now finally coming to the realization that I really am very sick..I try to convince my drs all the time that they must be wrong about my diagnosises but they just smile and kindly say"sorry but your very ill"..at least I tried :). ...I love fashion, hair and make up!!!even when I'm at home for days I still put on "real "clothes and at least some lip gloss and that keeps me feeling like myself. .my hair has finally grown back nice and thick after over a year of it falling out so bad I had holes all over my head. .now I'll have to go though full chemotherapy and loss it all. ..GREAT!...I'm very excited about my trip to Johns Hopkins mainly so I can get outta the house but then I'm kinda scared about how hard it's gonna be for me to travel..it's always something, I feel like I'm gonna have a little mental break down soon...I'm trying sooooo hard not to let it happen but I think its out of my control this time :(
Hi Dawn,
I don't know you but I am so very proud of you! You must be a very strong lady to be just now thinking you need to have to travel for additional help or even moreso, have a breakdown! Wow, what a champ! I have no advice in regards to your care or even how you feel or should feel, but what I do know is that we have a much higher Dr in charge and he has a special plan for you. If you must travel, just be prepared and be confident in that is where you must be being lead. You are an inspiration for us all that suffer our diseases. Please be safe, be smart and keep us informed of your treatment.
May God Bless and keep you in his loving care!
I agree with mamalama and ann. I am so sorry to hear you are going through all that. Is there anything you do during the day that helps at all while you suffer so much pain. I can’t even imagine all that stuff going on. I’m curious about how you have been able to get through the day. I do admire you getting dressed and putting on lip gloss. As bad as you have it,you have got it going in the inner strength area. So do tell me if you have any other things you do to help you through the day. Hang in there. You are in my prayers also.
You are in my prayers...
Dawn, I am so sorry you are going through so much. You are in my prayers too. To help your ride to JH how about planning comforts to have in the car. Not just snacks and drinks but a favorite pillow, blankets, slippers or socks. Anything that will help you someway to be comfortable as you can be. When I am not feeling well and traveling these things help me as I get cold even in the summer, just because I don't feel well. And you are way beyond just not feeling well. Gentle hugs, dear woman!
All great ideas! I have been where you are emotionally and reaching out for help was the first step Yay!
I’ve had SLE & all of the sneaky attacks to my body since 1995. In 98, I had Last Rites. It was then I decided to fight and have been seeing a counselor when needed along with taking antidepressants.
I was a nurse for 20 years and had to transition to staying home.
Now I have many hobbies, volunteer occasionally and start each new day fresh. I am feisty, resilient, determined and grateful.
A huge believer in personal goals, I take steps towards my big ones with small steps everyday. Life can be fulfilling, it is all in your perspective.
My current revaluation is genetics and how our nerve pathways metabolize our meds. Everyone is different, my body only metabolizes 20% of my meds…so off to research!
((hugs)) & prayers 
You are my hero. You are going through so much and have stayed so positive. I agree with Ann, you deserve to just let out the emotions and feel them for a bit. Why not? The immegdala can only store up so much of our repressed crap before we burst like a dam. You my dear deserve your tears, your anger, and please do get angry, as well as a little sadness and mourning. Hair loss is hard, on all of us, but especially those like you who are so beautiful and use to showing it. Well, now you get to show out a beautiful hat or wig for a bit. You can play with those and have fun. Who cares if others think you look great! We also deserve to just look how we really feel. It would be nice not to, but sometimes it’s nice to just be real and not have to push ourselves. We do that enough already. You have been pushing yourself so hard and for so long that your tiny little body needs a break. Let it. Just relax and remember that stressing makes it worse. Relax, trust in the doctors to help you cope and hopefully slow down these issues. Life is beautiful and you ARE one of the ones that make it even better for the rest of us. Thank you for that!
Hang in there. But mean while, get out the tissue and just let it out. Don’t stop until its all out. Don’t you dare keep it back. Just yell and hit and say how you feel. You have every right to feel every single one of your emotions. Jehovah God will hear you and he does understand. Even the worst things you say are understandable. Let it out, Hun.
Hugs,
Mindy
Donna, I am curious about your research. I have a son who metabolizes certain drugs unbelievably fast. Anesthetic he pops right out of and is totally awake and doesn't go back to sleep. He sees a pain management doctor who has never seen anyone like him. Son had a surprise urine test again the other day and the doctor is dumbfounded again. Son showed no drugs in his system at all even though he had on 2 20mg fentanyl patches on and 20 mg of Percocet in him.
Do you have any info on this that we could read on as he and I both have been trying to find answers since that doctor and others will not address it to his satisfaction. Thank you, Reet
Donna said:
All great ideas! I have been where you are emotionally and reaching out for help was the first step Yay!
I've had SLE & all of the sneaky attacks to my body since 1995. In 98, I had Last Rites. It was then I decided to fight and have been seeing a counselor when needed along with taking antidepressants.
I was a nurse for 20 years and had to transition to staying home.
Now I have many hobbies, volunteer occasionally and start each new day fresh. I am feisty, resilient, determined and grateful.
A huge believer in personal goals, I take steps towards my big ones with small steps everyday. Life can be fulfilling, it is all in your perspective.
My current revaluation is genetics and how our nerve pathways metabolize our meds. Everyone is different, my body only metabolizes 20% of my meds...so off to research!
((hugs)) & prayers ❤
Tie a knot in that rope and hang on. Sounds like you are having the worst time ever and I feel for you but there is always hope no matter how bad things get. Having the port will make it easier for them to treat you though it is a pain right now. The swelling will go down but you will still have a lump there just not as large. After your treatment start taking Biotin, it's a vitamin that helps promote and restore hair growth. My son lost alot of his hair after his numerous surgeries and it has helped alot and his hair is now back to normal almost. I was just diagnosed a couple of weeks ago so I don't know myself how things will go but I just try not to give up hope for the future, even if it is tough at times. My heart goes out to you and all I can do is encourage you to hang in and let you know you aren't alone in this and that you are loved just as you are. Your doc may be able to give you something to help with the anxiety too. It is really horrid when we don't have any control over our own conditions and have to rely on people we don't know but they always show up at the right time for a reason. Chin up my dear, thoughts and heart are with you.
I am new here and am moved by your courage. Sending positive thoughts and prayers your way.
Dawn, you are truly amazing to keep going with so much pulling you down! I so hope that you will find some great answers at JH. You really need some relief from all of the crap going on! Please keep us up to date and continue to rant anytime. Prayers and love for you!
Geneva
Thanks so much for all my support!!!I had a good cry but not too because my eyes will swell shut. …it’s always something lol…sending gentle hugs to you all!!xoxoxo
Dawn .. our prayers are with you; I cannot imagine being where you are right now and your strength humbles me. Much love to you. Dee
Praying for a remission for you! John Hopkins… Wow would literally give my right arm today to get in there… I even have Dr’s I work for calling them… I don’t know what’s worse than Lupus. I really don’t know. All I know is that I was once like you and then another switch turned on and bammm remission. It’s possible and I will pray that it will happen for you!!!
Hi
When are you going to Johns Hopkins?
I am praying you get some relief. I'm feeling sorry for myself just because I have non stop diahrea I should be ashamed of myself. Have a good trip change may be good for you.
xxxooo
Cindy
I also seem to have it worse in exact same areas as you....i do not think i am as bad as you but at times i been there. I am bit confused...are you on chemo for lupus...or due to other issues?
I did use methro and it did help slow the flares...so hopefully might help you as well. Okay to have mental breakdown...just go ahead melt on your best friend..sometimes best thing we can do is melt and just let it all out!
I noticed when i finally do that i let go of all the fear and stress and just accept what is...and eventually life gets okay again.
I really hope that your life does too...soon you are feeling better. I am really sorry that you are suffering now so much and hopefully as they say prayers do help well you sure all of us will be sending you positive prayers/energy what ever you want to call it!!
The dark days are the worst days. Just when you can’t imagine living through another breath, your motivation to keep going shows it’s presence. Life blessed me with an incredible “instafamily” that keeps me waking up everyday. My prayers are with you honey. Lupus is an awful burden to carry in life, but I keep telling myself that someone always has it worse than me…and they keep fighting. Keep positive thoughts flowing.
I understand those dark days. It helps to know you are not alone. When I was in the Army I learned that family can be found where you least expect it. The family you are forming here supports and understands you. You are not alone. Take time to notice what is beautiful and what you are greatful for. Expressing your gratitude will amazingly lift your spirits!
Hi siskiyousis:)…yes I’ve already been on Methotrexate and several other medications with no improvement and just continue to decline at a rapid pace. .chemotherapy, cytoxan is a last option medicine for severe lupus patients when nothing else works. .The relapsing polychondritis on top of severe SLE is what’s disabling me and destroying my cartilage. .I’ve only been "sick about a year1/2 so my decline has been very fast and furious. .I my cartilage started tearing in April with my left rotator cuff and now now it’s everywhere. John’s Hopkins finally called me and scheduled my appointment for January 2 with the head of rheumatology, dr ziminsky I think but that’s waaaay to far out for me. .my case worker from JH is really nice and has been working with my rheumatologist assistance the past few weeks to make this appointment happen but both agreed I need to be seen much sooner. .Now my rhemy is in direct contact with the JH dr to hopefully put me on her schedule by early November, we’ll see…
We’re all such tough cookies!!I’m very thankful to have all your support , advice and positive thoughts and prayers!! This group and the love and support for my awesome family, friends and fantastic daughter keeps me going and living each day the best I can. … Im always here for you all too:)xoxoxo