Question: . . . thank you for putting up this web page and sharing your story on-line. This is just the sort of thing I have been craving. Like you, I have been reading, reading, reading since my 2 year old was diagnosed with JIA just a few short weeks ago. But none of the medical literature or arthritis society brochures can tell me what it is going to be like as a parent to deal with this . . .even a mild case of JIA seems to have many lasting implications. I want it to go away and never come back, but that doesn't seem likely. Since this began, we had to pull her out of daycare because she couldn't walk. I've been off work for several weeks and I can't imagine sending my little girl back to daycare, even though she has had joint injections and is walking better and in much less pain. She is still just so fatigued. I don't know if this fatigue is normal or if it will go away.
Anyway I was wondering what you did when your beautiful little girl was first diagnosed. sent by WG of Canada
Thank you so much for your kind words!!! I created the page for the very reason you speak of . . . . it's the type of page I was craving when Anna was first diagnosed. I read so many medical web pages and information from various arthritis organizations, but the bottom line of what I wanted to know was how families were faring after the diagnosis, and what type of life/quality of life could I expect for my daughter in the future? I'm always very happy when other parents find the page (because then I feel like I'm accomplishing my purpose for traveling the Juvenile Arthritis journey!)----even though I'm sorry that you had reason to need to search for Juvenile Arthritis information.
When Anna was diagnosed, I was a stay-at-home mom. She was two at the time. I was a stay-at-home mom from 1990 until 2002, when I began working part-time. There were many times over the years (especially when Anna has had frequent doctor's appointments when her eyes have flared) when I wonder how it would work to have a full-time job and try to stay on top of everything. Those first few months after diagnosis were filled with physical therapy appointments, blood tests, and various doctor's appointments (ped. Rheumatologist, ped. Ophthalmologist, etc.) But I do know that there are some moms who do it. I don't know if you checked out the message board that I mentioned on Anna's JRA Page (see the link on the side bar here), but there are some moms who post there who work full-time and still manage (very well) their children's care and health.
My part-time job has been a real blessing. The job is with my church, and the pastor who hired me, while having certain expectations regarding getting the required work accomplished, was also very understanding and flexible went it came to Anna's various appointments. (Since he was Anna's pastor, he was also concerned about her health, as the head of our "church family.") Because he was so understanding, and because I have great respect for him, I tried to be intentional about scheduling Anna's appointments on my days/afternoons off when at all possible. That pastor has since moved to a different church in a different county, but my new boss/pastor is just as understanding when it comes to flexibility.
Because Anna's arthritis has always been mild, and her biggest issues have been with her eyes (the uveitis), we haven't dealt with a whole lot of painful mornings for her. That has made life easier than for those whose children tire out easily or have major pain issues at various times of the day. Anna did go through a period of time when her legs/knees would tire out easily, and there were also several years when she would have heartburn (esophagitis) issues (related to the medications she was taking). Anna did attend part-time daycare for about two years (for a few hours three times a week), but if I had had more of a choice (the daycare was at our church, and it was free since I worked there), I probably would not have chosen that particular daycare, or else I would have been extremely proactive in educating the director and Anna's teachers about Juvenile Arthritis. At the time, I didn't sense that they had much interest in learning much about Anna's issues (in all fairness, after becoming friends with the director over time, I think she would have been interested and concerned had I needed her to be), and because Anna's issues were relatively mild (waking up from a nap with a stiff knee) and because she was not at the center for a full day, we muddled through those two years without any major incident.
Since Anna started school, whenever she has medication changes or a period of very frequent doctors' appointments (like this past year, when her eyes flared), I keep her teacher, the school nurse, and the school principal informed of all that's going on with her. (Her doctors practice in a town about 20 miles away from our town---on the other side of a large city, so a trip to a specialist for Anna can sometimes take at least three hours, and if it's in the middle of the day, it can take up more than half of Anna's school day).
I've heard of other children who have experienced fatigue, so I know it's not unusual. (Disheartening, I know!, but sometimes part of the "package" of Juvenile Arthritis.).
I hope this information is helpful to you in some small way. And I hope that if you have questions that I can't answer, that you will feel comfortable in posting to the message board I previously mentioned. The moms there are SO friendly and kind, and they have become true friends (even though I've only met a handful of them in person!). What one of us can't relate to, usually someone else can. We bring a variety of diagnoses and severity of disease and experience to the table, so I find that board SO beneficial.
Thursday, August 9, 2007
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