My Journey to Today - 2 Weeks Post TKR
The focus of beginning this blog for me, is to provide a forum - a page to share my experience - my experience as a young person, now a young mom, living with an aggressive form of Rheumatoid Arthritis and Fibromyalgia. I was to share not only what daily life with RA and Fibro can be like - but also very importantly the long term effects - the prolonged damage, the surgeries, the loss of mobility and the disability. Along with these diagnosis comes a long list of secondary illness, disability, loss who we are and rediscovery of who I am now in light of my new life! I hope to connect with many of you that are young and have many years to live with this disease, with new joints, with nerve repositions, with disability and new abilities!
Recently, after living with several years of knee pain (began in 1994), I came to a point in September of 2012 where my knee was the size of a very large grapefruit. This was apparently for no reason - other then walking from my due to walking from my airplane to the car, curbside where my husband was picking me up. I had just had a Remicade infusion that day in Colorado; so in theory, I should have been feeling quite well - not swelling and in pain.
While I'd had an amount of swelling for years - coming and going as it does with RA -as the inflammation remained, increased pain to follow. I did the normal regiment, called my Rheumatologist in Colorado. Considering I was living in SLC at the time, the advice other then a round of steroids, which I'm strongly against, was to see an Orthopedic knee doctor.
The thing about me is that I have my favorite doctors. We frequently move in relation to my husbands job. I have tried 'new' doctors in 'new' places. There are many good ones, however, when you have ones that know your body, your condition - it's as if you've found a jewel, a few diamonds:)
Most of you reading this know the regiment in which a doctor will try with certain to joints to get the swelling down. I was stubborn - decided I live with enough other RA and Fibro pain, what's a little more. I let my knee be for a few weeks, limped along - got through it. I had began to convince myself that perhaps I actually injured it - went to a doc in a box over the weekend when I could no longer deal with the pain. He x-rayed it. He believed that it would have to be my RA. Of course he believed that my x-rays showed enough room between the bones. To be certain he ordered an MRI, set me up with a doctor at LDS Hospital in SLC and put a brace on it - you know....so I could walk!
My MRI showed a lot of arthritis, Dr. G was sad to show me, a just turning 32 year old a picture such as this....which was interesting to me that my x-ray showing so little. Again - here is my theory of training/experience that is pertinent to your particular healthcare!!
(Just a few Pictures of cartilage and bone)
Dr. G performed each of the general available options for me over the next painful 8th months. Starting with steroidal injections, wait, did not work. I then had a synovial surgery through arthroscopic mean - outpatient. This was a blessing. My surgeon was able to remove some painful pieces of cartilage that were in my terms floating around. The best part was that he was able to give pictures that show exactly what the rheumatoid had done to my knee. I had no meniscus on the medial side. The tibia, femur and patella all had extensive damage to the cartilage and bone. If was the evidence I needed to know why exactly my knee was so swollen and hurt so incredibly much. After the surgery I did not walk without a cane. I hope to with a month or so of my TKR. While visiting Arizona, I had some amazing friends, Kristen and Aletha that cared so much that I got to see the Sonoran Wildlife Preserve that they pushed me in a wheelchair....humbling - however I'm so very grateful it's available and that I've got such awesome friends!
My Friends and Kid Rock! Pushed me in a Wheelchair - a long hard path!
The last try for me was to do three injections of a fake synovial fluid. Apparently this works for up to a year in some patients, and of course is something that insurance likes see all options have been exhausted. As with every injection, the more you have the more they hurt.
Dr. G, we will call him, said after the surgery in November that I did indeed need a knee replacement. He, himself did not do them. He also said that I may have a hard time finding someone that with do a knee replacement in such a young patient. My argument for that was simple: I want to play with my kids NOW. When I am old, put me in a wheel chair. Many factors could change in the future. But I knew one thing for absolutely certain. I needed a good need now because I've got a lot of living to do, and I have a lot of playing with my kids to do. My little girl, 7, doesn't even remember me playing outside with them....because I've not been able to.
My mission at that point was to find a doctor that would do a total knee replacement in a young lady. I knew exactly where I would begin my search. My next blog, tomorrow, will finish telling my story, a story that I hope can encourage those of you told you may be too young to operate on, or that it'll be hard to find a surgeon that will help you. I searched for young stories of those of us in our 20's, 30's, even 40's getting joint replacements. I did not find much. I did not find enough. I hope to provide info and a area for discussion.
God Bless you Jessica!! I will be thinking and praying that you will recover and life will be full of activity with your family. There is no greater gift in life than children, especially your own children. Thanks for sharing your story, past and present. Take care!
ReplyDeleteTroy Wanner
Thank you for sharing your story with us, and with the rest of the world. It is truly inspiring to witness you take such charge of your health instead of waiting for it to take charge of you. You've got a lot of living to do and this is just another path of that journey!
ReplyDeletexoxo,
KP