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Saturday, February 26, 2011

One Step Forward, Two Steps Back

Remember when I made reference to the enemy coming against people that get too happy? That's the religious take and I am really starting to believe it. I have been walking on a cloud at the prospect of getting a writing career going that I, for an instant, forgot about this. Today (Saturday) we didn't have basketball games until 4:00. I told Leo that since I didn't get out this past week, I was going to wake up early and go to Barnes and Noble at 9:00 and come home at noon. I planned on working on my book for those three, wonderful, uninterrupted hours. I looked forward to it since I told Leo on Wednesday. Last night, Tommy started to complain that his legs hurt. By the time Nico's game rolled around (7:00), he couldn't walk and Gia was beside her self crabby. I couldn't go to Nico's game. I saw his face fall when I told him but told him I was for sure going to tonight's. I should know better than to plan on that. This morning, Tommy's legs still hurt him...enough to miss a party that he was looking forward to all week. I had to wait until 9:00 to call the doctor. I stupidly thought I'd still be able to salvage my day. At 9:30 the nurse called. I explained it and she made it sound like the doctor was going to call meds in for Gia and Tommy (they have done it before. I love my doctors). I told Leo that I was leaving, gave him the phone and told him if they wanted to see the kids, I'd meet him there but they were probably going to call in meds. I had one foot out the door at 9:45 and they called and told us to bring all the kids at 11:15. I hurriedly got the diaper bag ready and by 10:00, I was out the door. I was at Barnes and Noble by 10:15, got the largest sized caramel hot chocolate and sat down to write for a half hour. I got to the doctor's office at 11:15 and called Leo to see where he was. And where was he? JUST LEAVING THE HOUSE!!! So I am the one that had to go in the office and explain that my family was late. I mean...why was I even there? I take the kids to the doctor all the time without Leo there. This was my day. Why couldn't I pretend that I was at a full-time job that I couldn't leave and stay at Barnes working on my book? I know why...because I am the freaking mom! I hate the thought of my kids going through anything uncomfortable without me being there to help them through it. I know that if I was not there, Leo would have exaggerated parts and played off other parts and without me there to balance it, the doctor wouldn't have gotten a true picture of what was going on. For instance, the doctor asked if Tommy only feels pain in the morning and Leo said yes but he didn't know that I've been called from school several times because it hurts him in the middle of the day. Leo said that Nico's throat hasn't been hurting him but in reality, he complained twice that it did (Heaven forbid Nico can't play in the tournament).

Back story on Tommy's leg thing:A year and a half ago, Tommy started getting these red welts on his legs. They would come after a high fever. Each time he got them and he only got them when he was exposed to
Strep Throat, the pain would increase. The last two times, he could barely walk. This started when his idiot pediatrician (who wasn't even ours, he was just in the practice) who had a complete "God" complex wouldn't treat him for Strep. We are no longer with that practice and I wish I wasn't such a "play by the rules" person because I'd love to take his "God" complex and shove it down his throat. We have been to the CF doctor, infectious disease, Urgent Care and the ER and they all ran tests that came back normal and diagnosed him with Erythema Nodosum (which is painful red bumps on the legs related to but not always an infection. A common one is strep). He was tested for inflammatory diseases and they came back normal. Infectious disease tested him for auto-immune and they came back normal. When they came back normal, they said there was no need to see a rheumatoid specialist.

Back to today's appt:Now that they are back and progressively getting worse, we have to take him to a specialist. I don't want to. The doctor is pretty convinced that it is juvenile rheumatoid arthritis and Leo was sitting there nodding and agreeing and saying, "This is great that we'll finally know what it is." I do not share Leo's enthusiasm. At all. The doctor left and Leo finally noticed I was having a hard time holding it together and he said, "What's wrong? This is good." I asked him trying very hard not to lose it in front of the kids, "Do you even know what JRA is?" "No. Is it bad?" "Well, before you tie it all up in a neat little bow, you should know that it is an auto-immune disease that can be debilitating and it is not the good news that you and the doctor think it is." The doctor came back in the room and Leo asked if it was bad and he said, "This is totally treatable. He'll just have to see the specialist and they'll probably put him on a regimen of meds...blah...blah...blah." Do you know what I heard? "Another specialist telling you that something else is wrong with your child and more meds that he'll have to take and more doctor's appointments." Are you kidding me? Tell me how it is okay that Tommy has Cystic Fibrosis, Asthma and now maybe Juvenile Rheumatoid Arthritis??? I mean, CF should be enough, don't you think? I don't want to see a specialist because I don't want him/her to tell me that anything is wrong with Tommy. I don't want him to battle anything else. I can't make an appointment until Monday and I bet the pain will be gone and Tommy will be running around again and the doctor will look at me like I am crazy because that is what happened before.

I went back to Barnes upset by the whole thing and tried to write but was compelled to look up JRA and it scared me because it sounds like what Tommy is going through. I couldn't talk to anyone about the appointment because I go to B&N a lot and I didn't want to be known as the woman that cries in the cafe. Leo called me a half hour after I left him and said he needed a DVD that was in his car that I had and was I going to Target so I could drop it off. I had to drive home, drop it off, pick up the meds and go to Target all before 3:00. As I type this, it might sound like I did this calmly. In truth, I swore like a truck driver at Leo for forgetting to grab the DVD, was near tears when the meds were taking a half hour and only went to Target to get more strawberries and chocolate because it was going to be one of those nights. I had to tell Nico that I couldn't go to his game and I was so upset by the appt and that I was going to miss his game, that I sucked and started to cry. I just couldn't hold it together anymore. He hugged me and told me it was okay but I hate that I couldn't be stronger. Total writing time: 35 minutes (Not enough wine in the world to make this day better.)

Oh, and did I mention that Gia tested positive for strep? All of the kids are on meds which should be fun for the next 10 days.

This whole thing has me there such a thing as too happy? Do we always have to have one eye on the other shoe that might drop?


At March 11, 2011 at 6:15 PM , Blogger Maria said...

I completely agree. I think God doesn't like people who get too happy. It's almost like they have to be punished for not looking over their shoulder or for a bogey man behind their back. To add to the unfairness, nothing happens to people who are irresponsible, unreliable or who purely just don't care. Things just seem to work out for them in the end. Why is that?

At March 12, 2011 at 8:04 AM , Blogger AnnMarie said...

Oh, true about the unfairness of it all. I have a few posts coming up all about that!


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