Today I saw my orthopedic for my left knee before my benlysta treatment. .I injured it some how by simply trying to walk. .I have so many injury from doing nothing less than just waking up it doesn’t surprise me anymore. .so I’ve been on crutches for over a week, can’t bare any weight on it …The past few days the swelling around my knee cap disappeared leaving a few inches in diameter ditch! I was pretty freaked out:( so my orthopedic dr ordered an MRI for Thursday and he’ll go over the results immediately after. .During my appointment he did a physical examination, checking my rang of motion and saw the ditch. .Apparently my quadriceps are atrophied! I just don’t understand, how could my muscle just wast away when I’m still trying my hardest to walk even though every step is excruciating! My calf mussels are wasting too, it’s crazy. …has anyone gone or is going through a similar situation???I do have relapsing polychondritis with severe SLE so unfortunately I have a very dangerous combination of diseases… I’m so scared, even my amazing specialist at University of Miami are baffle!!I’m hoping and praying so hard the Johns Hopkins can save me. …I’m in sooooo much pain…I mean to have all my joints , hard and soft cartilage constantly ripping , disintegrating and tearing apart because my body is destroying it self on a daily basis is sooooo hard:(
Dawnceleste. I'm sad that you are having such a tremendous time, and respect and admire your continueing on despite very tough challenges. You are a real fighter, and an inspiration. How soon is the John Hopkins trip? Forgive me, because I know you had told me about looking forward to the train and scenery.
I do hope your pain is being addressed for now, you need to be able to sleep and keep up your strength. Healing positive thoughts and prayers going out for you.
hugs,
Louise
Actually with lack of use the muscles will atrophy rapidly so maybe not another catastrophe coming up Physical therapy can help rebuild the muscle as well as walking when you are able.
Thanks for your continued support ever one:)I am walking, I’m only in my wheelchair to be out and about…I literally woke up a couple months ago and my calves felt like jelly and my mussels tone was gone…I have a 3 story house so there’s lots of stairs to keep my leg mussels in shape. .of course I have to go slow on them and sometimes I have to scoot down on my butt lol. …I had surgery on my left knee January 2012 to remove a cystic tumor from the patella pad and was on crutches for a few weeks. .I saw how fast my knee area atrophied but I wasn’t waking at all then…it just doesn’t make sense. .sure I’m walking slow and labored with a cane, now with crutches but I’m still moving! Johns Hopkins isn’t till January 2 it’s sooooo far out:(I saw my rheumatologist today while I was in the waiting room at UM. We spoke for a bit and she promised she was still pursuing me having a sooner appointment at JH…I’ll be seeing the head of rheumatology there so obviously she an important lady with a long waiting list. . I see my rheumatologist November 5 so we’ll talk more then, think she’ll be taking me off benlysta and putting me on cytoxan. .goodbye hair:(
I'm thinking, if you do go on the cytoxin, will need a couple of great hats, and some beautiful scarves in patterns and colors you adore! Only for sun protection - you are beautiful just the way you are. It comes shining from the inside out.
So anyone with great shopping resources, please chime in?
more warm hugs, Louise.
I’m really sorry to hear this is happening. I will keep you in my prayers.
Brittany
You are in my prayers Dawnceleste,
Gentle hugs
Dawnceleste, you are a courageous young woman. I hope you get to JH much sooner. Meanwhile prayers and gentle hugs go out to and for you.
I am so sorry to hear you are going through so much......you are in my prayers........
gentle hugs and BLESSINGS ...........
How does the benlysta work for you, or does it?
Very sorry you are going through such a tough time. Even if you can't walk at times, keep exercising your limbs and body, there are many movements you can do sitting and laying. I find myself in this position more and more as my knees are giving out and the joints become more swollen. I am glad you shared with us. We are praying for you. I am grateful you have a rheumy that is trying to get you into JH. You have a lot in your favor. Most of all your faith and determination. Keep it up, girl. Physically, and spiritually...you are strong! Healing Hugs for you....from <3 ~Mare
So sorry all of this happens to you. It must be so hard to keep the faith! Please continue to keep us updated.
Keeping you in thoughts and prayers.
Prayers for comfort, strength and healing are with you!!!
Lori