tag:blogger.com,1999:blog-214039662519903374.post2543638600097846439..comments2023-12-26T03:23:44.664-05:00Comments on ONE DAY AT A TIME....: Leslihttp://www.blogger.com/profile/11652365701516479512noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-214039662519903374.post-76499939028044669432014-01-17T02:26:57.337-05:002014-01-17T02:26:57.337-05:00(continued) Titanium plates were placed to hold it...(continued) Titanium plates were placed to hold it all together and I needed a chin implant as my lower jaw was so badly deformed that I appeared have no chin. The surgery went well without any complications and the recovery was hard. Having your jaw wired shut made it impossible to eat anything that couldn't be sucked through a straw, and with arthritis medications, weight loss was tremendous. I lost well over 20 lbs over the course of 4 weeks. By that time, mom grew concerned, and started to really buckle down on my nutrition, going as far as putting extra butter in mac and cheese and watering it down a bit then slipping it through a gap I had between my jaws, (by then they were still "wired shut" with rubber bands holding the brackets close together). I've recovered perfectly from it and feel fine now (: Currently, both of my ankles, knees, elbows, wrists and hands are affected, though there is pain in my neck and hips. I am still taking Orencia, and unfortunately will soon "age out" of the pediatrics hospital I attend and will have to say good bye to the doctor who has recorded my progress since I've been diagnosed. This has been a long and hard journey for me, and I still battle it everyday. My current boyfriend knows better than to wake me out of bed and immediately ask me to do things! Winters are rough, and I fear having to switch medications yet again because Orencia hasn't been working too well lately. I write this, not too depress anyone or for any one to focus too much on all the negative that has come from this disease. I have flare ups from time to time, but then tend to be easily resolved after a few stretches and movement exercises. I'd rather you guys see what I had to say, taking account that this is from the point of view of a patient, not a parent, and that I can say finally, that yeah, it was rough, but it really could have been worse if I didn't have my loving mother by side every step of the way, giving me PT at home and trying her hardest to help. It IS possible to live a full, unlimited life, under the a pretty severe condition with the right medications and help. My mobility is mostly not at all limited (except mornings or longs periods of immobility), I dance, play soccer, jump, exercise, walk EVERYWHERE, and do mostly anything anyone else can do. The only thing I have trouble with is chewing chewy things such as starburst. (the worsttt). But without further writing, though my story is rather long, and it's pretty hard to condense 18 1/2 years of struggle, hardships, and happiness into a paragraph, I only have one thing left to say: Keep hope, stay strong. Mothers: never let your child believe that s/he will be different because of this, they are not. Explain to them that they may need precaution, but that they are no weaker or less capable than any other child. My mother was strong for me when I cried and bellowed as a child, then as I grew older, she started to motivate me that way, I learned first by admiration for her strength then gained my own. Thank you guys for hearing me out. I felt I needed to share this on a blog with a child under very similar conditions I've faced.Maribelnoreply@blogger.comtag:blogger.com,1999:blog-214039662519903374.post-4877874353853742162014-01-17T02:26:04.625-05:002014-01-17T02:26:04.625-05:00Hi, my name is Maribel, I was diagnosed with JRA a...Hi, my name is Maribel, I was diagnosed with JRA at 18 months old as well. 18 months old puts me back in 1995-ish. I am currently 20 years old. It all started with a limp and a swollen left knee that needed to be splinted and hours upon hours of PT, both at home and hospital. Since being diagnosed, (most of this is recollection from my mom, as i was too young to remember) I battled through it at first with methotrexate and naproxen, this I remember distinctly, because when I started medication I must have been around 4-5 years old, just before starting preschool and kindergarten. The side effects were AWFUL. I used to constantly break out in rashes and would have nausea and vomiting all the time. After a few years putting me somewhere in 3rd or 4th grade, I went into remission for about six months, after flaring up again, my doctor prescribed corticosteroids and enbrel. (He discontinued using the naproxen and methotrexate by then) Things were getting better for me battling with this for that time because I wasn't having nausea so much anymore, however school was a problem. Kids didn't understand and the popularity hierarchy of children mostly consists on who can kick the ball farthest, or ran the fastest, or jump the most rope. At least for my generation! (Ha, I feel so old now (: ) But, continuing with my story, I wasn't the most popular kid, which caused me a few deep rooted esteem issues, which thankfully I've finally overcome. Somewhere around 7th or 8th grade, I had to switch medications yet again due to the enbrel not working as well as it should anymore. I was then switched to humira. Humira worked wonders for sometime, but due to "not liking being pinched" (yes, I was a cry baby about it then, I regret it now), I rebelled against it and refused to take it, and at that age there was no way my mom could convince more or force me to take them. Fast forward to high school and i'm in 10th grade, when yet again, humira switched to Orencia, my current medication. Since taking that, I've been having WONDERS. I played soccer both 10th and 11th grade years! (Against my doctor's recommendations, but by then, I knew my body well enough to know what I could and could not allow myself to do.) Was it a smart decision? Probably not, but at that point in my life I refused to let myself be limited by my illness and proved that you could still live a full life with barely any restrictions. 12th grade was the worst, both psychologically defeated and physically agonizing for myself and my mother who was with me battling this since day 1. During my 11th grade year, while I was 17, I was getting CT scans on my teeth and jaw to prepare for braces because my teeth were crooked. The orthodontist discovered that there was a problem with my jaw joints. They appeared flat instead of round. It was then that I was told that I had TMJ. This had apparently developed for a while now and was either never noticed, or overlooked. My mom and I have resolved that it must've developed during the time that I was supposed to be taking the Humira but was skipping doses and basically went 2-3 years doing so. (This is why it's important to take the meds and why I regret it so much that I did what I did with humira) We started to talk to Oral surgeons about temporal-maxillo-facial surgery. This surgery entailed so much worked to be done, entirely involving my face, which was very bothersome for me because as a teenager, I was very concerned with my appearance. After a year with dealing with braces, the surgery date was set. August 25, 2011. I walked into the hospital that day before the sun rose, and came to well after it had set. My surgery consisted of cutting both my top and bottom jaw into 3 pieces each, in order to realign them and save the joint. (There is more, but I needed to split due to character restrictions.) ):Maribelnoreply@blogger.comtag:blogger.com,1999:blog-214039662519903374.post-43369859912611791472012-02-01T23:34:49.782-05:002012-02-01T23:34:49.782-05:00I would love to talk to some mothers who have chil...I would love to talk to some mothers who have children with arthritis. I am so depressed and all alone. my email is ashtono@yahoo.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-214039662519903374.post-77320596525052474542011-08-26T16:15:38.154-04:002011-08-26T16:15:38.154-04:00Hello Lesli!
I am new to your blog and desperatel...Hello Lesli! <br />I am new to your blog and desperately seeking people to join me too, on this journey! My daughter was diagnosed with JRA at 6 and a half. FIrst both knees swelled up like cantaloupes, then her ankles, then her cervical spine, and now, her left hip (although she also complains of her right hip hurting) but it is not confirmed in her right. Right around the time she was diagnosed, she also had a double whammy: after ruling out cystic fibrosis (yes, it was ruled out but emotionally taxing!!) she has severe persistent asthma. She is not allergic to anything but I believe it is much like JRA --just constant inflammation in her lungs, mucus, cough, constantly. She has been put high dose medicines, failed NSAIDs 5x, failed MTX, joint injections 4x, now on enbrel, PT, pneumonia, asthma attacks, high dose inhaled steroids, nasal steroids and oral steroids for the past 5 months. It has been an awful year. I do not even think I have had a chance to really fully grieve not having a "well" daughter anymore. I like your optimism. I like that you love the Lord. It made me cry. I feel very far away from God. We are believers but when your daughter asks you why is God not healing me, it broke my heart to say "I don't know." I am searching for a purpose in this, and it is hard to pass the faith and positive outlook on to your daughter when you are completely searching for answers yourself. Anyway, thank you for sharing... KateAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-214039662519903374.post-7398505865078870942011-02-20T18:01:52.305-05:002011-02-20T18:01:52.305-05:00Your story also sounds a bit familiar to mine-espe...Your story also sounds a bit familiar to mine-especially after the diagnoses you then think of how everything matches to JRA. The main difference is that my daughter was hospitalized at 8 months because they could not figure out why she was getting hives/rashes and fevers from no where and the initially diagnosed her with Kawasaki Syndrome. Now after a month in the hospital, many many tests, cat scans, xrays, blood, bone marrow biopsies, stool and unrine they have diagnosed her with Systemic JRA and we just started her on the prednisone and mexotrexate. We have seen improvement just like you and it is awesome to see that a child can come back around.Jaiden's Mommyhttps://www.blogger.com/profile/01800747037208311952noreply@blogger.comtag:blogger.com,1999:blog-214039662519903374.post-54335064479048151102010-12-29T09:00:25.136-05:002010-12-29T09:00:25.136-05:00I just got a chance to read Ayla’s whole story and...I just got a chance to read Ayla’s whole story and the way you found out and what the doctor’s said was like reading my daughter’s story, they were extremely similar.<br /><br />My daughter was just diagnosed last month and like Ayla, it all started with us noticing a limp…once we had the diagnosis and realized what joints were affected (both hips, both knees and her left ankle) a lot of the things she had been doing up to this point, crying for no reason, etc, all started to make sense…Bevin has ALWAYS walked funny, we all joked that she looked like a drunken sailor, not knowing that it’s affecting 5 joints in her legs we now know why she walked so funny. She would cry at times when we changed her diapers or clothes…<br /><br />No one I know has gone thru this or has a child going thru this so to be honest I have no idea what the future for Bevin’s diagnosis could or couldn’t hold, but I’m really glad I was able to find blogs like yours, reading the stories is helpful.<br /><br />I just started a blog for my daughter as well (how I ended up coming across yours) so that we could keep friends and family informed of how she’s doing:<br />http://www.bevinsadventureswithjra.blogspot.com/Nicolehttps://www.blogger.com/profile/00207906868551544748noreply@blogger.comtag:blogger.com,1999:blog-214039662519903374.post-31669471921046525812010-10-20T23:51:35.958-04:002010-10-20T23:51:35.958-04:00Your story has bits and pieces that sound similar ...Your story has bits and pieces that sound similar to what we went through. http://deetipton.blogspot.com/p/why-i-blog-method-behind-madness.html<br /> My little one NEVER slept until she started on Naproxen. She slept 15 minutes at a time as an infant. I haven't heard many other parents say that. To me, it's significant. It's so hard what our babies go through. God bless & thank you for sharing! It is so important that we get the word out! Arthritis isn't for sissies!Amadayhttps://www.blogger.com/profile/07951303205524536934noreply@blogger.comtag:blogger.com,1999:blog-214039662519903374.post-60237671906682707582010-02-20T18:54:08.027-05:002010-02-20T18:54:08.027-05:00oh my! My little girl is 19 months old and I can ...oh my! My little girl is 19 months old and I can not imagine the heartache you went through knowing your baby was hurting. Thank you for sharing your story!Michaelhttps://www.blogger.com/profile/07215441389883135658noreply@blogger.com