Sunday, July 15, 2012
Bruce has been feeling very good in the past week. One day he just felt really good. Bruce said he didn't know he still felt bad until he felt that good. He still has fatigue that's kicking his butt and were not sure where that's coming from. We tapered Bruce pretty quickly off Prednisone. He's on 10 mg as of today and Dr. N wanted us to stay there for a week. There are times when your not quite sure if something is going on in your kids body. You expect the little things...colds, sore throats, coughs etc...but even though I expect these little occurrences they don't happen often to Bruce. Well for one he's home schooled which has been a huge blessing. I could only imagine how ill he would be if he was in a brick and mortar school. As a family we do things when there's not a lot of crowds....on off days or especially when kids are in school. But sometimes you get the feeling that something isn't quite right. Which seems to be all the time lately. It's amazing how a little body can endure such pain and anxiety to not even know when he actually feels good. Now I've tried to keep a level head when Bruce gets sick....but it's hard because every time he gets sick it's something major. What you think might be little...is not. So I either wait and see or go to the Drs and get Bruce checked out. It was easier to wait and see when he was little and didn't have AI issues...but even then I didn't do that often because with Bruce it was always some thing odd. in 2006 he peed bright red, I ain't talking a tinge of pink....it looked like someone bled out...Hawaiian Punch red! He still will get blood in his urine, seen and unseen but not to that extent. Or he had to have his mastoid drained, or his umbilical hernia operation and eye surgery to create a tear duct that wasn't there. He also is very forgetful...He has trouble writing his thoughts down which we have been working on with biofeedback....which has helped a lot. So Bruce has been a bit of a wonder. I try not to take it to the next level but I can't help it. Cuz if I don't....well I think things would end up more disastrous. So I keep his checkups for him and last week, it was for his eyes and a check up on his Costochondritis. I went to see Bruces family doctor Dr B last Monday. He still had a pretty good cough and the costchondritis is still there but chest xray looked good. His nose is very dry and the doctor had felt it was allergies although he's been pretty good lately. The doc says nose is very dry and irritated. I forgot to tell him that he's been getting nose bleeds. Nose bleeds with very large clots. A bit scary but I too thought it was allergies. I really like Bruces ophthalmologist. Dr T is a great dr. He's very thorough and he is very cautious in regards to his patients especially the ones who have side effects of prednisone. When Bruce is on prednisone pressures build. Two weeks ago they were raised a bit but not much to give drops, so high normal. I went back last Thursday and his pressure was excellent as well as his optic nerve. Then he preceded to tell me that his eyes are very dry. In fact they are so dry that the bottom eyelids are completely cemented. Which means that his ducts on the lower eyelids are not producing anything. As he's looking at me and we both know where each others thoughts are going, I ask him if he is going to do The Test. He's says yup, we wait a few minutes and he tells me that he is still producing tears, which really doesn't mean a thing. I guess there is a couple types of tears. He gets an oily secretion each morning and he has been complaining that he thinks he has sand in his eyes or a hair or an eyelash which again I thought was due to allergies. My anxiety level is starting to raise a bit. He said he didn't think that he had Sjorgrens but thought it would be best to get some tests done and he would be sending a note to Dr. N.. Dr T also gave me some gel drops for lubrication 4 times a day as well as a Azasite drops for any infection that could possibly come up. Apply 4 warm compresses each day and wipe eye as you would be taking mascara off. Everything he said to me I did not hear and had to call back...I just kept thinking... Shit! Not another Auto Immune problem. I left the office and called Dr. Ns office. Left a msg for his nurse to call me because of what just went on at Ophthamologist office. Dr N called me back and was very pleased that Bruce feels better and no pain. I did explain about his eyes and he said he would do the testing at his next infusion but that it was probably just allergies. Well,its real nice that every one is hopeful...but if I'm talking to a Dr. and my child has arthritis and he comes up with dry eyes wouldn't it be something to look into. It sure did get quiet when I said his bottom lids were cemented and that nothing was coming out of his bottom lids. So we will wait for those tests to be done at infusion time. I really hope that it is his allergies or hormones that play a part this time around. I called the Sjorgrens Foundation and found out that most likely he might have this due to him having JA and YES the tests can come up negative since he is sero negative. His mouth is not dry but he's very thirsty and the nose bleeds is another indication too. It does make me wonder why every time he's put on steroids he does so well in his reading and memory...I've asked this to every single doctor and none know why except to say...he probably feels good. I'm not buying it...does it mean that there's inflammation in the brain? It's just something else that presents as a pattern and has to be checked...so we shall see. I'm trying to stay positive....but it's really hard when there are a few other signs of Sjorgrens that Bruce has that are very coincidental....I really don't want to go there but I have no choice. My hubby asked why do I always look at the bad side? Can't it just be what it is? Im not looking at the bad side...just doing my homework. Do you think I want to look at all this shit and pile more on our sons plate. So I do my research and look and look and look. I told him, it's my job and I'm sorry that I look into every little thing but if it's going to help Bruce in any way from getting aches and pains or make his life a bit easier then i will continue to do what I am doing and I don't see you doing it. Well I guess that shut him up. It's just another illness that's popped up and I have to research it and check it out. So within a few short weeks Bruce went from a UC flare to a JA flare to chostondritis and now dry eyes and nose bleeds. I guess I could shrug it off but it's not me, it's our kid. Hubby just wanted some down time for Bruce to enjoy his summer and so far it ain't so good. We continue to monitor Bruces inflammation with his gut monthly so we can stay ahead of a very dangerous area(colostomy). Down to one capful of Myralax a day, but the Asacol is his maintenance drug...so far so good. I am hoping for this little boy that he will have some time to just be a boy and not have to worry about any illness....at least for a while. and please please go away fatigue. Well it's 3am and I couldn't sleep...but I think I can now.