Well, I really wanted to get on much earlier and write this, but somehow the time just blew by tonight.
Most of our family had a cold/throat thing going on this week. The little people's asthma has been acting up, too. Emily told me a few days ago that her chest felt heavy. That scared me! When she had pnemonia in 2007 I had no idea that she was sick. I had her checked out because usually she & my son got sick in pairs. Fortunately, she's doing ok. This hasn't made her condition any worse, either. I can see the effects of her medicine not working more & more now. She had two baths tonight after I got home from work around 5. Granted, she's now lost two doses of Enbrel in preparation for Orencia.
Monday morning we meet with Congressman Bilirakis! I am very excited about this. He has not been supportive of the Arthritis Prevention & Control Act. Let's see if we can change that! : ) I'm taking both of the little people with me. This could be a wonderful educational experience! So many people that had JRA as children have said that because of their parents advocating on their behalf they learned many lessons that other children don't get to. There is so much that I can teach my kids about our political system through what we can do for the Arthritis Foundation. I can also teach them how to advocate for themselves. Someone else has to help these kids. People don't know that arthritis can kill children. The systemic form can also have a complication called Macrophage Activation Syndrome. MAS is excessive T-cell activation that causes overwhelming inflammation that can be fatal. Arthritis does not only affect joints. Why not? Where it affects joints is in the lining, the synovial fluid in between. Well, the heart has a lining. Other organs have linings. That is why the eyes can be affected. (Uveitis) I thank God daily & I feel so blessed that Emily is NOT systemic, but I also cry for the children that are. So many people don't know these things; they think that it's just a couple of painful joints. There is so much more to it than that. It's a rheumatic, auto-immune disease. Not just a little wear & tear. I really wish they would change the name to something else instead of Juvenile Arthritis. Maybe then these kids would get more help. I'm willing to do my part.
The other exciting part is that after meeting our congressman we will head to All Children's to start IV Infusions of Orencia. I was terrified when I found out that it can take 3-6 months to kick in. With the way that she turns purple in 95F weather I can't imagine how bad this coming winter would be with a med that had lost its effectiveness. I managed to get a rush appointment at her rheumy's (thank you, Michelle!). Her doc agreed that it is time to make a change. Enbrel has been amazing. Enbrel gave her a LIFE back when she was at her worst with this disease. Changing meds is hard for her; it's hard for me, too. I don't like waiting for something to kick in, I don't like uncertainty. She was completely terrified to start, but thanks to the awesome nurses in the Infusion Room at All Children's Hospital the fear is less. The one that was with us through most of our visit (when Em broke down completely, tried to run, wouldn't talk to anyone, shut her eyes tightly, & tried to eat her fist) gave her an IV bear. This thing was sooooooo cool! It came with everything needed to "give the bear an infusion & after-care". How cool is that??? That helped her to figure it out and make her peace with it. It also helps that instead of having lab work drawn every six weeks, two shots of Enbrel a week, and Methotrexate every week when her white counts would let us, she will only have one dose a month after the first month. They can draw her blood then, and give her one shot of the MTX. Since she's off of the MTX more often than not because of her white count, her doc switched her dose to one shot every other week. I hope that will do it. She needs it, but we can't have her running around with no infection fighting ability all of the time. It's a delicate balance. Anyway, they plan to have a therapist there to talk to her for her first dose. Many children have the same fears that she does. They say we'll only be there for an hour, and it has almost no side effects. I just want her to be able to move freely again. For the last few months she's been so stiff. She has a hard time getting up from the couch, and the baths are often. The pain hasn't been remarkable to her enough to say something, but that means nothing. She often doesn't complain. I'm just happy to be able to do something proactive. I hate just sitting back helplessly. Wish us luck and keep us in your prayers!
Sunday, September 12, 2010
Saturday, September 11, 2010
Please play golf for a good cause!
To the Florida golfers: there's still time to register to enter Patrick's Putt Away the Pain tourney! It's in Odessa on September 17th. This tourney helps to send children with rheumatological illnesses (like lupus, scleroderma & juvenile arthritis) to camp. They need overnight camps with doctors on staff to administer their meds. Please help support a great cause & have fun doing it!
http://gatorbuzz.net/golf/ or puttawaythepain.com
Thursday, September 2, 2010
What a crazy day!
Let me start by saying that I am completely exhausted- like, falling asleep in my chair tired. However, I promised an update and I don't really see any time tomorrow for it, so forgive me if this doesn't fully make sense.
I took Zach to school this morning, leaving Emily at home. I had figured since our drive is over an hour to get to her rheumy and school doesn't start until almost ten it didn't make sense to take Em to school. She would be there an hour and miss lunch. We're generally at the doctor's for HOURS. Sometimes outside in the waiting room for 3-4 hours before we even get into a room. So, that was the plan. I had just gotten back home when Em's teacher called. Apparently the district decided to send people to evaluate her writing, but had neglected to tell anyone. Well, I'm all for anything that could help so we rushed back to the school and had a wonderful meeting. Now, she is still whiny lately and she is shy with people she doesn't know. She had a little meltdown, but it passed quickly enough. I explained that she could either help the people that are there to help her or I'm leaving the room. They brought a wide array of pencil grippers. It was amazing, actually. The lady, Patsy, asked questions and befriended Emily while helping her to pick grippers while the man, Mr. Roberts, was watching how she held each pencil. By watching her hand position and gaining her feedback they decided on 2 different grippers for her to use in school. They also evaluated her typing skills. This allows them to decide on a program that is right for her to help her learn typing. With this she can use assistive devices on the FCAT. He also massaged her wrists and was amazed at the tension in her back. Touching her back is (to me) like touching the back of a little elderly person. All stiff and tense. That meeting went so well! He told me that he can see the scleroderma in her wrists and hands. This PT actually knew about her conditions. He understood what they are, not just what they do. I'm always happy to have a medical conversation with anyone that has a clue. :) At the end of the meeting we rushed out to head to All Children's.
We got to ACH at 12:30- just in time. We signed in and ran to the cafeteria to grab her some lunch. I'm glad we did that. We didn't leave the hospital until just past 4. I had a bunch of questions to ask, but the biggest were answered right away. Her doc was all for moving to Orencia. He understood that she wanted her Methotrexate back. (How many kids do you know that whine because they don't get their shot?) He says: "Well, this isn't a traditional idea, but she's not a traditional case. Since we can't lower her dose, why don't we try every other week instead of weekly?" Works for me! She absolutely panicked when we agreed to try the Orencia. We had discussed it in the past, but she didn't want to do it so she wouldn't listen. She cried for a good hour. I can't say I blame her. I think that she thought she would be admitted to the hospital and have the IV in her wrist, which she really doesn't like. We all tried to calm her down and have her explain what was so upsetting about it, but she just couldn't do it there. We attempted to show her the Infusion Room but she kept her eyes closed the whole time. Finally, one of the IV nurses offered us a bear. I have pics to post but they didn't send to my Facebook and my phone is off & charging atm. Anyway, this bear is sooooo cool! He came with his own IV drip bag, "needle", splint board, bandaids, alcohol swabs, tape, gauze, tourniquettes, everything. She ended up having a great time playing with the bear, which opened her up for some questions. She's happier about it now. We explained that we can put it where she usually has her blood draws. Not to mention that we can have her draws go through the same port at the same time! No longer will she have 2-3 shots a week plus labs every 6 weeks. At home we'll give her one dose of MTX a month. The other she'll get at the hospital while she's getting her labs drawn and getting her Orencia. At first she'll have to go three times in a month but after that it's every 4 weeks. The drip is a half hour, the total time there usually being about an hour. For the first year & a half on Enbrel it was our miracle. She was a changed girl who went from screaming and hiding from people, afraid of being touched to tackling her brother. Why should we settle for a slow down? Why should we settle for needing 2 or more baths a day because she can't loosen up? I don't think that's fair. It's slow-acting, it can take up to 6 months to fully work, but it has to be better than where she's at right now. I wanted to catch it before a full-flare. This way, they are right next door to our rheumy- on the same floor, even! If she starts to have a hard time we'll request solumedrol to be added while we're there. (It's an IV steroid often used to help control the inflammation in our JA kids). I'm confident this is the right decision. I have spoken with enough parents, doctors, and even Orencia reps to be confident. We were planning on scheduling today but she was so upset there that we couldn't. Hopefully tomorrow I can get an appointment made. It will be a few days before we can get in so that they can argue with my insurance company. (Yay.)
One last note- he got help! They gave him a nurse practitioner! That should help immensely. I forget her name, but she seems very, very nice. I'm so thrilled for him! He needed more help quite some time ago. They have started to revamp the way they do things, but I know they have still been losing people. Ok, time to crash. Take care, ya'll!
I took Zach to school this morning, leaving Emily at home. I had figured since our drive is over an hour to get to her rheumy and school doesn't start until almost ten it didn't make sense to take Em to school. She would be there an hour and miss lunch. We're generally at the doctor's for HOURS. Sometimes outside in the waiting room for 3-4 hours before we even get into a room. So, that was the plan. I had just gotten back home when Em's teacher called. Apparently the district decided to send people to evaluate her writing, but had neglected to tell anyone. Well, I'm all for anything that could help so we rushed back to the school and had a wonderful meeting. Now, she is still whiny lately and she is shy with people she doesn't know. She had a little meltdown, but it passed quickly enough. I explained that she could either help the people that are there to help her or I'm leaving the room. They brought a wide array of pencil grippers. It was amazing, actually. The lady, Patsy, asked questions and befriended Emily while helping her to pick grippers while the man, Mr. Roberts, was watching how she held each pencil. By watching her hand position and gaining her feedback they decided on 2 different grippers for her to use in school. They also evaluated her typing skills. This allows them to decide on a program that is right for her to help her learn typing. With this she can use assistive devices on the FCAT. He also massaged her wrists and was amazed at the tension in her back. Touching her back is (to me) like touching the back of a little elderly person. All stiff and tense. That meeting went so well! He told me that he can see the scleroderma in her wrists and hands. This PT actually knew about her conditions. He understood what they are, not just what they do. I'm always happy to have a medical conversation with anyone that has a clue. :) At the end of the meeting we rushed out to head to All Children's.
We got to ACH at 12:30- just in time. We signed in and ran to the cafeteria to grab her some lunch. I'm glad we did that. We didn't leave the hospital until just past 4. I had a bunch of questions to ask, but the biggest were answered right away. Her doc was all for moving to Orencia. He understood that she wanted her Methotrexate back. (How many kids do you know that whine because they don't get their shot?) He says: "Well, this isn't a traditional idea, but she's not a traditional case. Since we can't lower her dose, why don't we try every other week instead of weekly?" Works for me! She absolutely panicked when we agreed to try the Orencia. We had discussed it in the past, but she didn't want to do it so she wouldn't listen. She cried for a good hour. I can't say I blame her. I think that she thought she would be admitted to the hospital and have the IV in her wrist, which she really doesn't like. We all tried to calm her down and have her explain what was so upsetting about it, but she just couldn't do it there. We attempted to show her the Infusion Room but she kept her eyes closed the whole time. Finally, one of the IV nurses offered us a bear. I have pics to post but they didn't send to my Facebook and my phone is off & charging atm. Anyway, this bear is sooooo cool! He came with his own IV drip bag, "needle", splint board, bandaids, alcohol swabs, tape, gauze, tourniquettes, everything. She ended up having a great time playing with the bear, which opened her up for some questions. She's happier about it now. We explained that we can put it where she usually has her blood draws. Not to mention that we can have her draws go through the same port at the same time! No longer will she have 2-3 shots a week plus labs every 6 weeks. At home we'll give her one dose of MTX a month. The other she'll get at the hospital while she's getting her labs drawn and getting her Orencia. At first she'll have to go three times in a month but after that it's every 4 weeks. The drip is a half hour, the total time there usually being about an hour. For the first year & a half on Enbrel it was our miracle. She was a changed girl who went from screaming and hiding from people, afraid of being touched to tackling her brother. Why should we settle for a slow down? Why should we settle for needing 2 or more baths a day because she can't loosen up? I don't think that's fair. It's slow-acting, it can take up to 6 months to fully work, but it has to be better than where she's at right now. I wanted to catch it before a full-flare. This way, they are right next door to our rheumy- on the same floor, even! If she starts to have a hard time we'll request solumedrol to be added while we're there. (It's an IV steroid often used to help control the inflammation in our JA kids). I'm confident this is the right decision. I have spoken with enough parents, doctors, and even Orencia reps to be confident. We were planning on scheduling today but she was so upset there that we couldn't. Hopefully tomorrow I can get an appointment made. It will be a few days before we can get in so that they can argue with my insurance company. (Yay.)
One last note- he got help! They gave him a nurse practitioner! That should help immensely. I forget her name, but she seems very, very nice. I'm so thrilled for him! He needed more help quite some time ago. They have started to revamp the way they do things, but I know they have still been losing people. Ok, time to crash. Take care, ya'll!
Wednesday, September 1, 2010
Appointment tomorrow!
This morning I called the doctor voicing my concerns about the beginning of the flare. Today was another rough day for Emily; she's having trouble running and keeping up, & she needed frequent breaks during her physical therapy tonight. I know how incredibly busy her rheumatologist is. I don't expect callbacks often because of this. I was completely floored today when they called me back this afternoon to ask if we could come in tomorrow! I am sure that her meds need to be changed. I know that the Orencia that he wants to move her to takes about 3 months to kick in, but can be as long as 6 months. I know that she is in for a VERY long winter if we don't get something going fast since she isn't on anything for her Raynaud's. I feel like we're racing against the clock with these meds at the moment. I have a ton of questions for once. Mostly things like: has she had an anti-CPP test done so that we could possibly help out in the Emory study? What is CARRA group doing in our area? Could the Lupus Pernio that she has developed in the past maybe be because she has Lupus? I wanted to talk to them again about pointing newly diagnosed families to the Facebook pages if they can't give my contact info. So many things to cover! I'll post ASAP tomorrow after her visit! Wish us luck!
Tuesday, August 31, 2010
Something's up
Every once in a while Emily will get very whiny. Sometimes it means nothing. Sometimes it means that she's getting sick. Sometimes it signals the start of a flare. This morning she woke up that way. I'm hoping it means nothing more than maybe she didn't sleep well? She knew that she had labwork today. Usually that doesn't bother her too much anymore, but today she wouldn't get up, wouldn't get dressed, wouldn't let me help her dress. When she's like that she'll run & hide, crawl around, and generally act like she's two. In some ways I can't blame her. She cried pretty much all the way to All Children's Specialty Center for her labwork, and most of the time there. She finally calmed down after the needle went in. It kills me on those days when it's so hard for her. It truly just isn't fair! Not when you're 8 years old, to have to go so often. She was pretty calm by the time I got her to school.
Her teacher called me this afternoon to tell me about the breakdown that she had in her math class. She has my math block. (No, I haven't told her about my previous fear of math, & I have overcome it for the most part!) She has taken it to a very high level. Anything that she has to work at she gets angry about. We're working on figuring out a solution, but I think that today's outburst occurred from whatever made her so cranky this morning. After dinner tonight she told me that she felt dizzy. She has never, ever told me that before. She asked me to check her temp but actually it was a bit low at 97F. We'll just have to keep an eye on her. She can't tell when she's sick, so we need to be vigilant.
On a happier note, today I took my placement tests for college! Due to never having taken algebra, I knew that I would need some math classes. I had forgotten a lot- including stuff that I taught myself just last year. I didn't do the greatest on my math, but I'm actually happy about that because I crave the refresher & challenges of new material! My English, however... I worried about that because I had forgotten a lot of the rules. I haven't gone over the rules since maybe 1991 or 1992. I was confused because I was expecting the test to last 2 hours. I was finished in an hour & 3 minutes. There was no essay. I was looking forward to the essay. The reason there was no essay? A score of 100 or higher on the reading & sentence structure qualifies one for honors classes. I had 101 on my reading and 117 on my sentence structure!!! Non-believers skip here: Thank you, God for helping me to pass this test! I know that it is in your plan, which I'm trying my best to abide by. Thank you for giving me the strength, the courage, the knowledge, the serenity to do this. I know that you were by my side the whole time. Thank you!!!
Needless to say, I am very proud of myself, though I don't know if that was really me in there or not! I just can't believe it. I'm so excited to start on this new journey. By the end of it, I will be qualified to really properly take care of my baby. Of course, by then she'll be an adult, but that's ok! I want to do this right... not fast! Bedtime for me. It's been a crazy, exhausting day! If ya'll would, prayers for the bean, please! Thank you! :)
Her teacher called me this afternoon to tell me about the breakdown that she had in her math class. She has my math block. (No, I haven't told her about my previous fear of math, & I have overcome it for the most part!) She has taken it to a very high level. Anything that she has to work at she gets angry about. We're working on figuring out a solution, but I think that today's outburst occurred from whatever made her so cranky this morning. After dinner tonight she told me that she felt dizzy. She has never, ever told me that before. She asked me to check her temp but actually it was a bit low at 97F. We'll just have to keep an eye on her. She can't tell when she's sick, so we need to be vigilant.
On a happier note, today I took my placement tests for college! Due to never having taken algebra, I knew that I would need some math classes. I had forgotten a lot- including stuff that I taught myself just last year. I didn't do the greatest on my math, but I'm actually happy about that because I crave the refresher & challenges of new material! My English, however... I worried about that because I had forgotten a lot of the rules. I haven't gone over the rules since maybe 1991 or 1992. I was confused because I was expecting the test to last 2 hours. I was finished in an hour & 3 minutes. There was no essay. I was looking forward to the essay. The reason there was no essay? A score of 100 or higher on the reading & sentence structure qualifies one for honors classes. I had 101 on my reading and 117 on my sentence structure!!! Non-believers skip here: Thank you, God for helping me to pass this test! I know that it is in your plan, which I'm trying my best to abide by. Thank you for giving me the strength, the courage, the knowledge, the serenity to do this. I know that you were by my side the whole time. Thank you!!!
Needless to say, I am very proud of myself, though I don't know if that was really me in there or not! I just can't believe it. I'm so excited to start on this new journey. By the end of it, I will be qualified to really properly take care of my baby. Of course, by then she'll be an adult, but that's ok! I want to do this right... not fast! Bedtime for me. It's been a crazy, exhausting day! If ya'll would, prayers for the bean, please! Thank you! :)
Monday, August 30, 2010
Things that make my heart melt
While it will never be the life that you want for your child, having a child with chronic health problems has some wonderful blessings that go with it. I have an especially close relationship with my children, partially (I believe) because they know that we will go to the ends of the Earth to help them, we appreciate them for who they are and don't try to change them, and because we know when to be gentler, when they need us.
Emily's hands are affected more than any other part of her body. It makes it very hard for her to write. On a good day they are swollen. That said, it is very difficult to decipher her writing, but I found something tonight that I found so sweet, so beautiful that it just really made me melt. I went into her backpack to make sure that she had everything that she will need for school tomorrow. I found something that I hadn't noticed on Friday. At first I thought that it was a birthday invitation. However, the envelope simply said "Mommy". Inside I found this:
"Dear Mommy,
I am having P.E. outside during recess and I am having fun. But I am pooped out from the sun. It is hot, I have to sit out a lot. But I (illegible)
Your little girl,
Emily"
So, I'm thinking here I have this wonderful, sweet, precious, fragile child and during the middle of a busy school day, she's thinking of me. How special is that??? It's been a hard month for her, and it seems to be getting tougher. I think I'm going to try to move our rheumy appointment up a week or two if we can. She's taking two baths a day lately, and telling me tonight that she was so stiff that she couldn't get up. She asked me for help getting dressed today. But she's so sweet, her personality so charming that we never mind. It's the people like her that take every day as a wonderful new challenge, that fight without complaining, that make the best of every situation that really have it right. Problems are just challenges waiting to be worked out. If you can approach them with optimism, you have a greater chance of success. That is how this little bean lives her life. That girl is my hero.
Emily's hands are affected more than any other part of her body. It makes it very hard for her to write. On a good day they are swollen. That said, it is very difficult to decipher her writing, but I found something tonight that I found so sweet, so beautiful that it just really made me melt. I went into her backpack to make sure that she had everything that she will need for school tomorrow. I found something that I hadn't noticed on Friday. At first I thought that it was a birthday invitation. However, the envelope simply said "Mommy". Inside I found this:
"Dear Mommy,
I am having P.E. outside during recess and I am having fun. But I am pooped out from the sun. It is hot, I have to sit out a lot. But I (illegible)
Your little girl,
Emily"
So, I'm thinking here I have this wonderful, sweet, precious, fragile child and during the middle of a busy school day, she's thinking of me. How special is that??? It's been a hard month for her, and it seems to be getting tougher. I think I'm going to try to move our rheumy appointment up a week or two if we can. She's taking two baths a day lately, and telling me tonight that she was so stiff that she couldn't get up. She asked me for help getting dressed today. But she's so sweet, her personality so charming that we never mind. It's the people like her that take every day as a wonderful new challenge, that fight without complaining, that make the best of every situation that really have it right. Problems are just challenges waiting to be worked out. If you can approach them with optimism, you have a greater chance of success. That is how this little bean lives her life. That girl is my hero.
Monday, August 23, 2010
Our elementary school ROCKS!
Hiya!
As always, there's so much going on! The staff at Emily's school has continuously been a huge help & even a source of support. For one thing, I'm speaking to her class tomorrow about her conditions. In the past, more of her classmates than not have known about her arthritis & such. Now she has only a few students that she knows in her class. I want to prepare them, for one thing. I'm not sure how other kids her age react to her turning purple. I don't want them to be scared. I don't want them to think that she's getting special treatment when she learns how to type and gets to write less. Or wonder if she's ok if she's out a week or two.
I've been in touch with their nursing staff all week. They had me call the doctor's office to fax a new note so that they can administer Motrin to Emily throughout the day. The school nurse called me on Friday. It's important to discuss changes in meds, side effects, current problems, etc. I mentioned that the Enbrel just isn't cutting it lately. Emily's been very stiff, and lately she's asking us for her Motrin often. I am hoping that she can hold off on a full flare until her next doctor visit. We discussed that, and changed her status slightly. The new changes will make it possible for her to stay home the next time that she has a flare that incapacitates her. She can then be put on the Homebound Program. I sure never thought that I would have to worry about anything like this years ago. Right now I feel like there's a ticking time bomb just waiting to go off. Her doc didn't think that the dose change on the Enbrel would work long, but it was worth a shot. Anyway, the nurse is going to contact our rheumy's office to see if there's anything else that they think should be changed. It makes me so happy that they are so caring and wonderful about it. I suppose it helps that Em's an absolute sweetheart. Her strength will never cease to amaze me.
Ya' know, I wake up almost every morning with a feeling of excitement! Good things happen more often than most people notice! I'm excited about the kids school year, excited about my school year starting (hopefully) soon, excited about endeavors for the Arthritis Foundation, and for myself to hopefully help some parents of newly diagnosed children. I'm cautiously excited about her next rheumy appointment. I'm hoping that he'll make the change to Orencia now. If it takes 3-6 months to work fully we need to start it NOW. There are so many good things on the horizon. I'm working on preparing for my meeting with Congressman Bilirakis. That's a bit scary, but also very exciting!
If you haven't had a chance please watch the video from the previous post. It hit me hard tonight. I may not be doing my best in all ways 100% of the time, but one of the most important things that I've learned this year is that it's better to fight for some things than just hang passive as I usually do. I've learned that no one else will advocate for our families, for us if we don't. I don't just mean for arthritis. I mean for other health conditions, maybe school issues, health care. There are so many things that we should stand up for, but usually don't until we're pushed into action. We're so content to sit back and watch the world going on around us, but there comes a time when we need to fight for our families. I realize that the song talks about this on a much more personal, intimate level, but honestly when I heard it I thought "Wow. Yes, I am doing what I can. And I have a very happy household." That is awesome. Ashley doesn't really have a religious belief yet. She felt weird and unhappy when I was dragging her with me to church. Far be it from me to push her away. And that's ok. Don't get me wrong... I pray to God that she'll come around. I want her to believe in something, but I can't force her. That said, there is God all over this house. No, not like in paintings and books and magazines. I mean, with Jesus in my heart, He gave me joy. My joy has brought joy to the rest of the family. Ashley says that she laughs more at home than she does at school. How many almost-16-year-olds can say that? Where there is laughter, there is no anger. If you open your heart, try to understand those around you, put yourself in their position... you'd be surprised how much nicer you become. Let go of the little things! Do you think it would matter if your spouse died tomorrow that he or she didn't get the laundry done? Do you think that you should be trying to control their actions? Why should you? To control is in a big way to change. Why try to change those that you love? Everyone has a right to be themselves. I'm messed up & broken & I love it!!! It makes me feel so free to know that we all are! It's ok to mess up, as long as it's not always the same thing over and over. We treat our kids like people because that's what they are. And they're happy, respectful, and sweet children. That's all that I could ever ask for.
As always, there's so much going on! The staff at Emily's school has continuously been a huge help & even a source of support. For one thing, I'm speaking to her class tomorrow about her conditions. In the past, more of her classmates than not have known about her arthritis & such. Now she has only a few students that she knows in her class. I want to prepare them, for one thing. I'm not sure how other kids her age react to her turning purple. I don't want them to be scared. I don't want them to think that she's getting special treatment when she learns how to type and gets to write less. Or wonder if she's ok if she's out a week or two.
I've been in touch with their nursing staff all week. They had me call the doctor's office to fax a new note so that they can administer Motrin to Emily throughout the day. The school nurse called me on Friday. It's important to discuss changes in meds, side effects, current problems, etc. I mentioned that the Enbrel just isn't cutting it lately. Emily's been very stiff, and lately she's asking us for her Motrin often. I am hoping that she can hold off on a full flare until her next doctor visit. We discussed that, and changed her status slightly. The new changes will make it possible for her to stay home the next time that she has a flare that incapacitates her. She can then be put on the Homebound Program. I sure never thought that I would have to worry about anything like this years ago. Right now I feel like there's a ticking time bomb just waiting to go off. Her doc didn't think that the dose change on the Enbrel would work long, but it was worth a shot. Anyway, the nurse is going to contact our rheumy's office to see if there's anything else that they think should be changed. It makes me so happy that they are so caring and wonderful about it. I suppose it helps that Em's an absolute sweetheart. Her strength will never cease to amaze me.
Ya' know, I wake up almost every morning with a feeling of excitement! Good things happen more often than most people notice! I'm excited about the kids school year, excited about my school year starting (hopefully) soon, excited about endeavors for the Arthritis Foundation, and for myself to hopefully help some parents of newly diagnosed children. I'm cautiously excited about her next rheumy appointment. I'm hoping that he'll make the change to Orencia now. If it takes 3-6 months to work fully we need to start it NOW. There are so many good things on the horizon. I'm working on preparing for my meeting with Congressman Bilirakis. That's a bit scary, but also very exciting!
If you haven't had a chance please watch the video from the previous post. It hit me hard tonight. I may not be doing my best in all ways 100% of the time, but one of the most important things that I've learned this year is that it's better to fight for some things than just hang passive as I usually do. I've learned that no one else will advocate for our families, for us if we don't. I don't just mean for arthritis. I mean for other health conditions, maybe school issues, health care. There are so many things that we should stand up for, but usually don't until we're pushed into action. We're so content to sit back and watch the world going on around us, but there comes a time when we need to fight for our families. I realize that the song talks about this on a much more personal, intimate level, but honestly when I heard it I thought "Wow. Yes, I am doing what I can. And I have a very happy household." That is awesome. Ashley doesn't really have a religious belief yet. She felt weird and unhappy when I was dragging her with me to church. Far be it from me to push her away. And that's ok. Don't get me wrong... I pray to God that she'll come around. I want her to believe in something, but I can't force her. That said, there is God all over this house. No, not like in paintings and books and magazines. I mean, with Jesus in my heart, He gave me joy. My joy has brought joy to the rest of the family. Ashley says that she laughs more at home than she does at school. How many almost-16-year-olds can say that? Where there is laughter, there is no anger. If you open your heart, try to understand those around you, put yourself in their position... you'd be surprised how much nicer you become. Let go of the little things! Do you think it would matter if your spouse died tomorrow that he or she didn't get the laundry done? Do you think that you should be trying to control their actions? Why should you? To control is in a big way to change. Why try to change those that you love? Everyone has a right to be themselves. I'm messed up & broken & I love it!!! It makes me feel so free to know that we all are! It's ok to mess up, as long as it's not always the same thing over and over. We treat our kids like people because that's what they are. And they're happy, respectful, and sweet children. That's all that I could ever ask for.
Subscribe to:
Posts (Atom)