April has probably been one of the best months we have had in quite some time. April has been filled with good news, and happiness over things to come :)
April was kicked off by our camping trip with our Cub Scout family. I had really been looking forward to this weekend as a little vacation. I was hoping that Emily would be ready to run around with her friends, but she actually wanted to be with me for 98% of our time there. The first night I think we kept everyone awake :) She has some, ummm, flatulence issues. Honestly, my little princess can let 'em loose better than any guy I know. Our first night in the tent she had gas so badly that she woke up her brother, and across the campsite her farts were heard. Kevin got a text saying "Gas gas gas :)" and we all about died laughing! This was around 4 A.M. We had a few people come over to the tent to see what all of the commotion was about. We were hysterical!!! What a great day that was. I love being out in the woods, and being there surrounded by family (including extended!) was really cool. We took a nice hike the next day. I wish I didn't have to push the wheelchair, that Emily wouldn't need the chair, but I'm so happy that she was able to come because of it. We saw some beautiful plant life along the way, & even stopped to grab some wild blackberries! That weekend was just what I needed to feel back in tune with reality.
Though it's not a huge, noticeable difference yet, Emily is definitely losing some of the steroid weight. She is so excited about that! She keeps telling me about different things that she can do, like button her pants more easily. I see a huge change in her attitude this month, likely due to the last steroid decrease. She has more energy, she wants to do more, she has some goals set. Because of this she is happier, doing things like walking more and playing Wii Sports again, and finally she is back to loving her brother like a friend! That has been the hardest part of all of this. She & her boy were always so close; suddenly she was cranky towards him more often than not, yelling at him and just being mean to him. I'm so glad they are playing together again. As Kevin said recently, harmony has been restored. It's the little things that we've missed, like that. She actually wants things again! I never thought that would make me happy! Yes, truly April has been a turning point.
She's doing well in school, too! She had the 2nd best grade in her class on her Time test. That is exciting partially because she missed that chapter & she worked extra hard to catch up! For a while she didn't care at all about her school work, or anything else. She's really determined right now, & I'm so thrilled to watch it happen. We had a fantastic IEP meeting in school for her. They are increasing her time with the school Physical Therapist, trying to pull her out during PE since she has such big limitations in there. She can do low impact things like walking, but nothing that could potentially cause injury as the steroids can cause brittle bones. Her teachers are very proud of how far she has come this year not only with her school work, but also with her attitude. She used to have "math breakdown", but she seems to have moved past that. We are very, very blessed that our school is as caring as they are. Before placing her in this class they really stopped to think & talk about where the best place for her would be. They were absolutely right to place her in this class. She isn't just taught; she is cared for. Obviously, any parent would want their kids cared for in school, but when it's a child that has dealt with so much, that really needed to be nurtured and loved, it is much more appreciated. I love these teachers in a way that I don't think they could understand. You just couldn't know how much their love for her has meant to me, or to her. They have impacted her life in a huge way. Truly that is God watching out for us, trying to make some things easier. They have been a gift.
Our Make A Wish volunteers called just the other day to say that we have been approved for our Disney Make A Wish trip! We are all so excited! All that I need to be happy is to watch the kids be happy; that makes this a dream come true for me. I was so happy that as soon as I hung up with our volunteer, I burst into tears. The kids kept asking me what was wrong :) I was just so happy. There have been so many things that Gir has wanted to do, but we haven't been able to accomodate her because of time or money. There are many things that this trip will address for her. And it will be wonderful for my dear, sweet little man. He's such a good boy, so tolerant & sensitive. He needs something really good. My mom told me the other night that he was telling her how things were going so well that he was worried about what was going to go wrong next. That's how things roll around here. I swear, it's always things that we could never have controlled in a million years. But hey, life is never boring!
More good news is that Kevin went for his yearly physical to find that everything looks good! His labs are where they should be, too. He is getting better slowly but surely. We go on our trip at the end of May. My hope is that by then Kevin & Emily will feel so much more like themselves. I want them to both feel good & have a great time. This trip needs to be magic, especially for Em, but for Kevin & the kids, too. I am so excited that I could burst! May is also our arthritis walk, too :) We look forward to that every year. It's so nice to be with people that understand you, even if you don't know them. I'm sure that I'm forgetting to mention a bunch of things, but I've covered the big stuff now.
I found a blog post that really hit me. It made me stop and think about how Emily must feel. Here is the "Arthritis Angels: A Walk In Someone Else's Shoes" post.
Hey, it's spring! Don't forget to look around at some of the beautiful flowers, including weeds, that have popped up :) I truly believe that these are gifts to us, meant to put things into perspective. Will you stop to smell the roses today? You really should....
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
Friday, April 22, 2011
Friday, April 8, 2011
Very good appointment!
I apologize for not updating sooner. My little bout with a sinus infection has become a battle. I have been feeling kind of like I was hit by a truck. Since I ache too much to sleep, I shall write :)
This past month has been a turning point for Emily, so I knew that this appointment would be good. Before as the steroids were so high and their effects hit her so hard, she had a rough time adjusting. I can't imagine how she was able to deal with the dosage that she started out with- physically or emotionally. Back in October she was started on 42mgs. She had 21mgs in the morning and the other 21 at night. With this appointment we continued on the taper that we started months ago. They dropped down to 6mgs this month! I had expected it would drop to that. Last month when they had us take her to 12mgs for 2 weeks & then 9mgs for three weeks, they told us they would likely drop her down to 6mgs this month. They also told us that this is generally around the time that you start to see the steroid weight drop off. That is huge because it is so uncomfortable. It is as hard for her to bend over as it is a pregnant lady, and her center of balance is off. She still has a long way to go but she knew that it was drop off because she can fully open her jaw now! That was yet another thing that had made her sad, & she has been waiting for the day where she could finally open her mouth again. Last visit they said that her muscle enzymes were better than they had seen them, and normal for the first time. This time they were even lower! That's huge.
They did decide to increase her Remicade for next time for her joints. Her back has been bothering her enough so that she wanted to get her infusion. I still expected the usual fear that grips her the day before, that causes a huge crying jag that night and has her silent and terrified the whole way over. Usually she barely speaks on the way. This time she was in a really good mood, really ready to go. She watched "Tangled" on the ride and was even singing along to the songs! I haven't really heard her sing since September. I think she knows that right now it's all downhill, so to speak. I try to hard to keep her educated and in the loop. She understands that this is what I've been telling her would happen. She told me the other day that she's really glad that we switched to Shands. I'm thrilled that she's happy there now, even if she does have a way of yelling at Dr. E every time we see her. I'm not sure why. I think that she resents her still from keeping her in the hospital, even though she knows it was for the best. I'm just happy that I can finally really say that she's doing very well. She does still have a long way to go, but she's not flaring right now. I love how she went from never telling anyone that she was hurting to telling me every little ache and pain. Sometimes it's silly things, but I'll take the silly if she's willing to talk about it. She's acting more like herself, talking to her brother like he's her best friend again, really trying to tackle school with a new enthusiasm, & she's really excited about Make A Wish. I am so, so glad that we have that so she has something amazing to look forward to. I truly believe that has a LOT to do with how happy she's been lately. At her lowest points it gave her something happy to think about. What a huge, huge blessing that is. I know that we have a long, possibly difficult road ahead with her disease. It could stay like it is, it could turn into full blown Scleroderma or Lupus. Or it's possible it could go into remission. We have to keep a vigilant eye out for signs of pulminary hypertension & other systemic signs, but right this minute she's the best she's been in a while.
There are many other children out there with arthritis that are not doing so well. Little GS has so many struggles with his vision. They actually had to put a drain in his eye. His family has been fighting for his vision for years. DSW has had more pain from arthritis that they can't control that she uses her wheelchair now way more than she should have to, but they are stumped. PL has been trying to be pain-free for three years now, & they still don't know how to help him yet. H&J are still looking for the meds that will help them, too. These are just the kids in our state. There are too many kids suffering silently. These brave little heroes need a cure.
This past month has been a turning point for Emily, so I knew that this appointment would be good. Before as the steroids were so high and their effects hit her so hard, she had a rough time adjusting. I can't imagine how she was able to deal with the dosage that she started out with- physically or emotionally. Back in October she was started on 42mgs. She had 21mgs in the morning and the other 21 at night. With this appointment we continued on the taper that we started months ago. They dropped down to 6mgs this month! I had expected it would drop to that. Last month when they had us take her to 12mgs for 2 weeks & then 9mgs for three weeks, they told us they would likely drop her down to 6mgs this month. They also told us that this is generally around the time that you start to see the steroid weight drop off. That is huge because it is so uncomfortable. It is as hard for her to bend over as it is a pregnant lady, and her center of balance is off. She still has a long way to go but she knew that it was drop off because she can fully open her jaw now! That was yet another thing that had made her sad, & she has been waiting for the day where she could finally open her mouth again. Last visit they said that her muscle enzymes were better than they had seen them, and normal for the first time. This time they were even lower! That's huge.
They did decide to increase her Remicade for next time for her joints. Her back has been bothering her enough so that she wanted to get her infusion. I still expected the usual fear that grips her the day before, that causes a huge crying jag that night and has her silent and terrified the whole way over. Usually she barely speaks on the way. This time she was in a really good mood, really ready to go. She watched "Tangled" on the ride and was even singing along to the songs! I haven't really heard her sing since September. I think she knows that right now it's all downhill, so to speak. I try to hard to keep her educated and in the loop. She understands that this is what I've been telling her would happen. She told me the other day that she's really glad that we switched to Shands. I'm thrilled that she's happy there now, even if she does have a way of yelling at Dr. E every time we see her. I'm not sure why. I think that she resents her still from keeping her in the hospital, even though she knows it was for the best. I'm just happy that I can finally really say that she's doing very well. She does still have a long way to go, but she's not flaring right now. I love how she went from never telling anyone that she was hurting to telling me every little ache and pain. Sometimes it's silly things, but I'll take the silly if she's willing to talk about it. She's acting more like herself, talking to her brother like he's her best friend again, really trying to tackle school with a new enthusiasm, & she's really excited about Make A Wish. I am so, so glad that we have that so she has something amazing to look forward to. I truly believe that has a LOT to do with how happy she's been lately. At her lowest points it gave her something happy to think about. What a huge, huge blessing that is. I know that we have a long, possibly difficult road ahead with her disease. It could stay like it is, it could turn into full blown Scleroderma or Lupus. Or it's possible it could go into remission. We have to keep a vigilant eye out for signs of pulminary hypertension & other systemic signs, but right this minute she's the best she's been in a while.
There are many other children out there with arthritis that are not doing so well. Little GS has so many struggles with his vision. They actually had to put a drain in his eye. His family has been fighting for his vision for years. DSW has had more pain from arthritis that they can't control that she uses her wheelchair now way more than she should have to, but they are stumped. PL has been trying to be pain-free for three years now, & they still don't know how to help him yet. H&J are still looking for the meds that will help them, too. These are just the kids in our state. There are too many kids suffering silently. These brave little heroes need a cure.
Friday, April 1, 2011
Where does the time go?
The past two or three weeks have just blown by. There are so many things that I have been wanting to write about, but I just haven't had time. Here I sit with my face feeling all sinus-pressurey, knowing that I won't be able to go to sleep, so now seems like a good time :)
We've had our usual ups & downs. I decided that we desperately needed something fun to do, so we took a Sunday & Monday over the kids spring break to go to the Rennaissance Festival and Busch Gardens. The kids had a blast, & I did, too. It was harder for Kevin. He's still trying to get back to himself, but he trooped along trying to make the best of it. My son was so excited for BG! We used to always have yearly passes, but we hadn't gone in a couple of years. It's amazing how much has changed, and how big my little people have gotten. They were interested in a whole different way now. It was a truly wonderful couple of days. It was eye opening in some ways. There were several kids around her age that just stared at her like she was an alien. Some parents, too. We tried to shift the focus off of her, but I think they are drawn in by her chair. I don't think that she noticed, & we weren't going to point it out. Then, on her first day back to school she came home angry. Two little kids were pointing and laughing at her. My sweet little girl went right up to them and yelled at them. I am so proud of her. I think that was a first.
Emily started to cough last week. I have gotten to this point where I really just dread taking her to the doctors. We are just so over it. We always seem to have someone get sick whenever we have plans, or at every other bad time. I often think how nice it would be to have just one month without a doctor visit. Wouldn't that be lovely? We have a fantastic Pediatric Urgent Care center in our area, so I took her there. They're open the odd hours so you can go there when your pedi is closed. We went late Friday night. They have their own lab, x-ray machines, and pretty much everything that an ER would have, so it seemed like the best option. The only downfall is that they only accept one insurance per patient- not 2. And they don't take Medicaid. Our primary is United so I figured I'd just eat our copays because we were already there, and she felt comfortable. We were there for quite some time, but mostly because the doctor doesn't deal often with conditions like Emily's. (When you have something that only affects about 3 kids out of a million you find that many doctors aren't schooled on it.) I was thrilled that he took the time to educate himself before he came in to see her. For once it was only her asthma acting up :) The doc put her back to 30MGs of Prednisone for the week, up from her current 9MGs. We took her back to our regular pedi a few days later. She was clear, no asthma detected. Somehow, I wasn't really surprised when the nothing turned into a sinus infection. Our pedi actually told us to keep her inside until May. I'm not really sure how practical that is, but we will try. We go back to them on Monday, and then for her Remicade on Tuesday. I plan on asking her pedi if it's ok to take her camping. I have been dying to go; camping is like a vacation for me. I need to be in the woods, need to bond with nature for a while. We put off so many things already.
While Emily is recovering slowly from her sinus infection, we are counting down the days until her next infusion. She's only been on Remicade since October. We're still trying to find the right dosage for her. Normally we would have gone this week for her infusions, but the school & hospital is on spring break. (Crazy, eh?) That means waiting an extra week for her arthritis meds. Poor little bean is not having a good week. First it was her wrist, then her knee. Those seem to be better by now, but now it's her back. She was crying trying to get into her bed tonight. :( Her back is hurting her so badly right now. I thought that it was the muscle that she pulled at PT a few weeks ago, but Kevin is brilliant with massaging and feeling muscle abnormalities and he thinks it's the arthritis. (When it comes to muscles, I couldn't feel my way out of a paper bag...) I'm hoping that she can get through the next few days with minimal pain. Tuesday we'll have a very long drive. I hope she can handle it. I bought her "Tangled" since we all loved it so much. Maybe I can play that for her on the way up to the hospital to take her mind off of the pain.
Speaking of pain, the bills from these types of hospital/ doctor's visits are crazy!!! People may have thought that I was crazy when I said that I got social security for her, but look below at this insurance statement. This is what I get from our primary, before it goes off to Medicaid. (Thank you, Lord for Medicaid!!!) How can anyone afford copays like that??? I surely could not afford to pay $1100 a month just for treatments. Granted, it's better than $10,000 but, really??? Nope, she doesn't have anything serious wrong with her. We just like to waste money. Yup. I've heard that IVIg's cost something like $36,000 each. How can anyone afford these things? This is why I support the Arthritis Foundation's quest for a cure, and funding for NIH. (National Institute of Health) There has to be some better way to get people their medicines than IV only. There has to be other treatment options waiting in the wings for when these meds no longer work, but you've run out of options. There has to be a cure somewhere, some way. We just need the right people working to find it. It isn't fair for our kids to suffer so greatly, or for adults. It's so sad when your child tells you that they are looking forward to their infusion. To me, that is just wrong. We need to support better research, but we also need to raise awareness that many diseases under the arthritis umbrella are autoimmune, not caused by old age. It's just as unfair for someone to tell these victims that they can't be hurting because we can't "see" their pain.
We've had our usual ups & downs. I decided that we desperately needed something fun to do, so we took a Sunday & Monday over the kids spring break to go to the Rennaissance Festival and Busch Gardens. The kids had a blast, & I did, too. It was harder for Kevin. He's still trying to get back to himself, but he trooped along trying to make the best of it. My son was so excited for BG! We used to always have yearly passes, but we hadn't gone in a couple of years. It's amazing how much has changed, and how big my little people have gotten. They were interested in a whole different way now. It was a truly wonderful couple of days. It was eye opening in some ways. There were several kids around her age that just stared at her like she was an alien. Some parents, too. We tried to shift the focus off of her, but I think they are drawn in by her chair. I don't think that she noticed, & we weren't going to point it out. Then, on her first day back to school she came home angry. Two little kids were pointing and laughing at her. My sweet little girl went right up to them and yelled at them. I am so proud of her. I think that was a first.
Emily started to cough last week. I have gotten to this point where I really just dread taking her to the doctors. We are just so over it. We always seem to have someone get sick whenever we have plans, or at every other bad time. I often think how nice it would be to have just one month without a doctor visit. Wouldn't that be lovely? We have a fantastic Pediatric Urgent Care center in our area, so I took her there. They're open the odd hours so you can go there when your pedi is closed. We went late Friday night. They have their own lab, x-ray machines, and pretty much everything that an ER would have, so it seemed like the best option. The only downfall is that they only accept one insurance per patient- not 2. And they don't take Medicaid. Our primary is United so I figured I'd just eat our copays because we were already there, and she felt comfortable. We were there for quite some time, but mostly because the doctor doesn't deal often with conditions like Emily's. (When you have something that only affects about 3 kids out of a million you find that many doctors aren't schooled on it.) I was thrilled that he took the time to educate himself before he came in to see her. For once it was only her asthma acting up :) The doc put her back to 30MGs of Prednisone for the week, up from her current 9MGs. We took her back to our regular pedi a few days later. She was clear, no asthma detected. Somehow, I wasn't really surprised when the nothing turned into a sinus infection. Our pedi actually told us to keep her inside until May. I'm not really sure how practical that is, but we will try. We go back to them on Monday, and then for her Remicade on Tuesday. I plan on asking her pedi if it's ok to take her camping. I have been dying to go; camping is like a vacation for me. I need to be in the woods, need to bond with nature for a while. We put off so many things already.
While Emily is recovering slowly from her sinus infection, we are counting down the days until her next infusion. She's only been on Remicade since October. We're still trying to find the right dosage for her. Normally we would have gone this week for her infusions, but the school & hospital is on spring break. (Crazy, eh?) That means waiting an extra week for her arthritis meds. Poor little bean is not having a good week. First it was her wrist, then her knee. Those seem to be better by now, but now it's her back. She was crying trying to get into her bed tonight. :( Her back is hurting her so badly right now. I thought that it was the muscle that she pulled at PT a few weeks ago, but Kevin is brilliant with massaging and feeling muscle abnormalities and he thinks it's the arthritis. (When it comes to muscles, I couldn't feel my way out of a paper bag...) I'm hoping that she can get through the next few days with minimal pain. Tuesday we'll have a very long drive. I hope she can handle it. I bought her "Tangled" since we all loved it so much. Maybe I can play that for her on the way up to the hospital to take her mind off of the pain.
Speaking of pain, the bills from these types of hospital/ doctor's visits are crazy!!! People may have thought that I was crazy when I said that I got social security for her, but look below at this insurance statement. This is what I get from our primary, before it goes off to Medicaid. (Thank you, Lord for Medicaid!!!) How can anyone afford copays like that??? I surely could not afford to pay $1100 a month just for treatments. Granted, it's better than $10,000 but, really??? Nope, she doesn't have anything serious wrong with her. We just like to waste money. Yup. I've heard that IVIg's cost something like $36,000 each. How can anyone afford these things? This is why I support the Arthritis Foundation's quest for a cure, and funding for NIH. (National Institute of Health) There has to be some better way to get people their medicines than IV only. There has to be other treatment options waiting in the wings for when these meds no longer work, but you've run out of options. There has to be a cure somewhere, some way. We just need the right people working to find it. It isn't fair for our kids to suffer so greatly, or for adults. It's so sad when your child tells you that they are looking forward to their infusion. To me, that is just wrong. We need to support better research, but we also need to raise awareness that many diseases under the arthritis umbrella are autoimmune, not caused by old age. It's just as unfair for someone to tell these victims that they can't be hurting because we can't "see" their pain.
 |
 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Remark Code Description Date of Service | | Billed Amount  | | Network Discount | | Applied to Deductible | | Paid by Plan | | Patient Responsibility | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| D2* Op Misc. Services 02/01/2011 - 02/28/2011 | $9,474.30 | $3,979.21 | $0.00 | $4,396.07 |
| |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Subtotal(s) |
| |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Totals | $9,474.30 | $3,979.21 | $0.00 | $4,396.07 | $1,099.02 | |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Amount You May Owe | $1,099.02 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
Monday, March 14, 2011
JA Picnic, Make A Wish
After I got home from work, I laid down to watch TV, and woke up 5 hours later!!! (Oops!) The great part about it? It's 4 A.M., almost everyone is asleep, and I now have time to update without everyone talking to me at once :)
This has been a wonderful week! Starting with last Saturday, (which I realize is now more than a week ago). Last week, we made the trip over to Orlando to join up with the Arthritis Foundation's Juvenile Arthritis Family Picnic :) Unfortunately, Kevin was still radioactive and in isolation so he couldn't go, but I packed up all three kids. Gir thought that she would be bored. I knew better :) I knew that there would be some older siblings there. It is so awesome to be able to get the kids together with other kids that are suffering in ways similar to them. The beautiful thing about this is that when they get tired, no one bugs them to keep going. These kids understand each other in ways that most other kids can't. If they can't run, no one is going to name call, or harass them to get their way. The kids had a wonderful time connecting. It was really cool to look around and see the ways that certain people clicked with others. My son followed around little Dakota, the older woman for him :) Little Carolina & Cole clicked as well. They are both so little that it was absolutely adorable watching them! I tried to get pics but totally missed the opportunity. Emily made a special friend, also. I had wanted Emily to meet Parker for quite some time. I just knew that they would click. They seem to have similar problems at the moment, too. Em is really shy; she wouldn't just go talk to him. Somehow, they finally got talking! They chatted away for quite some time. They really understood each other- so important right now. While the kids were busy playing and getting to know each other, the adults had the opportunity to chat and compare notes. I had met most of our mom's before, but it honestly felt like I knew them all so well. (Thank you, Facebook!) It is so important to share your triumphs and frustrations with people that understand!!! Heidi brought books, including one that she had made based off of her blog! (Pretty cool, huh?) She also brought a few classics that got passed around. Some were for kids and others were for us adults. When this is what you live and breathe but don't get to talk about much to people in your normal daily life, this is very important. There is so much sympathy from family to family, children and parents alike. Those that are going through a LOT still think about other that are going through less. We have an amazing extended family now that I am so blessed to have met. Some great things really do come out of bad situations!
Proving how quickly things can happen for these immune suppressed children, Heidi's daughter got sick on the way home. She ended up going to the ER the next day and staying at the hospital for four days. You would never have had any idea that she was ill watching her play. We all know that often you can't tell with our kids. These little people are so used to feeling badly that until it gets very, very bad they can't often tell that they are sick. Of course, I think we all panicked over this. Worrying for her, hoping she would be all right sooner rather than later, but also hoping that our own children wouldn't get sick. For some it would be just plain disasterous.
I had such a wonderful time on Saturday that I actually felt relaxed for the whole week. Maybe having a three day weekend helped, too. I have been in a fantastic mood all week. By Wednesday night I was feeling a little edgy, waiting for the Make A Wish volunteers to come. On the one hand, I am so thrilled for Emily because just by telling her about, her attitude is better. Not that she's been unpleasant. Not by any means! It's just that she seemed to have no will to do anything before. It was so sad to always see her sitting at scouts alone while everyone was playing. They weren't excluding her; she was just too unhappy to want to play. Just thinking about her wishes has made her happier. Having them come over just made it real to her; she knew that I was truly following through with what I said.
When our Make A Wish volunteers came, they came bearing gifts for all of our kids. That is so important. I'm so happy that they try to make the siblings feel special, too. I try so hard to love them all equally, but of course there are more demands from Emily. I have to spend more time with her. No, we can't just go places like other families can. It depends on how well she feels for the day, if we need the wheelchair, how easy it will be to use the chair, etc. Most of the time we are home. It takes a toll on the other kids. I can't tell you how many times we've had to cancel plans or change them at the last moment because of health concerns. Anyway, one volunteer sat with me and we filled out paperwork and talked about the future. The other one sat with Emily and together they decided on her wishes. (They do it this way so that they make sure that the child understands that it's almost anything they want, and not what other people want them to do.) For her wishes Emily did ask for her Disney trip, or a hot tub, or to be a princess. They have them pick 3 in case they can't do one or two, or if the doctor vetoes the plan. It really didn't take long, and I think that Emily feels really good about this. It is so exciting to think about! Our rheumy said that they almost never turn down a Disney request.
I truly hope that the Disney one gets granted. That is what she wants most of all, and of course that is what all 3 kids will enjoy most. I had thought that it would be only Disney, but apparently it's a week in Orlando with tickets to any parks that you'd like to go to. I have heard that they make it absolute magic. No waiting in lines for most things, a MAW volunteer guides you through the parks, and often everyone goes out of their way for the MAW families. There's also a Cinderella meet in the castle. She would love that!
I am also using this as incentive to get her moving. I told her that while I don't mind taking her chair, I don't want her to have to use it every second we're there. I am hoping to use this to build her endurance back up a bit, and her muscle tissue, too. It's amazing what we'll do when there's something to look forward to! I'm hoping that this will also help her to burn off some of the steroid weight. This week we decrease her dosage to 9MGs daily! I can't wait until we're on 6MGs- that's where they say the weight will really start to drop off. One wonderful thing about the steroids is that she finally eats!!! This is the kid that wouldn't eat much of anything, who wouldn't try new things, who ate like a bird. Now this is the girl that carries one lunch menu around in her backpack, has one next to her bed, frequently reads them in an anticipatory fashion, and talks non-stop about food! Before we tried everything to get her to gain weight, but now we may have to worry about her gaining too much! It's better than being 42lbs at age 9, right? She's earned a new nickname: Sharky! :) She's so funny! We are soooo blessed! She's had a few joint issues, but nothing major. Her Remicade is increasing at her next appointment. Hopefully that will do the trick. My only worry is that she should be seen the first Tuesday of April but it will now be the 2nd Tuesday because all of the docs will be out of the office that whole week. She usually starts to hurt the day before, so I hope this doesn't result in a flare.
I have got to get to bed! Have a wonderful Monday! :)
 | |
| Emily & Parker |
 | |
| These 4 got along so well! My son has a huge crush on Dakota, and Emily & Parker clicked quickly. |
Proving how quickly things can happen for these immune suppressed children, Heidi's daughter got sick on the way home. She ended up going to the ER the next day and staying at the hospital for four days. You would never have had any idea that she was ill watching her play. We all know that often you can't tell with our kids. These little people are so used to feeling badly that until it gets very, very bad they can't often tell that they are sick. Of course, I think we all panicked over this. Worrying for her, hoping she would be all right sooner rather than later, but also hoping that our own children wouldn't get sick. For some it would be just plain disasterous.
I had such a wonderful time on Saturday that I actually felt relaxed for the whole week. Maybe having a three day weekend helped, too. I have been in a fantastic mood all week. By Wednesday night I was feeling a little edgy, waiting for the Make A Wish volunteers to come. On the one hand, I am so thrilled for Emily because just by telling her about, her attitude is better. Not that she's been unpleasant. Not by any means! It's just that she seemed to have no will to do anything before. It was so sad to always see her sitting at scouts alone while everyone was playing. They weren't excluding her; she was just too unhappy to want to play. Just thinking about her wishes has made her happier. Having them come over just made it real to her; she knew that I was truly following through with what I said.
When our Make A Wish volunteers came, they came bearing gifts for all of our kids. That is so important. I'm so happy that they try to make the siblings feel special, too. I try so hard to love them all equally, but of course there are more demands from Emily. I have to spend more time with her. No, we can't just go places like other families can. It depends on how well she feels for the day, if we need the wheelchair, how easy it will be to use the chair, etc. Most of the time we are home. It takes a toll on the other kids. I can't tell you how many times we've had to cancel plans or change them at the last moment because of health concerns. Anyway, one volunteer sat with me and we filled out paperwork and talked about the future. The other one sat with Emily and together they decided on her wishes. (They do it this way so that they make sure that the child understands that it's almost anything they want, and not what other people want them to do.) For her wishes Emily did ask for her Disney trip, or a hot tub, or to be a princess. They have them pick 3 in case they can't do one or two, or if the doctor vetoes the plan. It really didn't take long, and I think that Emily feels really good about this. It is so exciting to think about! Our rheumy said that they almost never turn down a Disney request.
I truly hope that the Disney one gets granted. That is what she wants most of all, and of course that is what all 3 kids will enjoy most. I had thought that it would be only Disney, but apparently it's a week in Orlando with tickets to any parks that you'd like to go to. I have heard that they make it absolute magic. No waiting in lines for most things, a MAW volunteer guides you through the parks, and often everyone goes out of their way for the MAW families. There's also a Cinderella meet in the castle. She would love that!
I am also using this as incentive to get her moving. I told her that while I don't mind taking her chair, I don't want her to have to use it every second we're there. I am hoping to use this to build her endurance back up a bit, and her muscle tissue, too. It's amazing what we'll do when there's something to look forward to! I'm hoping that this will also help her to burn off some of the steroid weight. This week we decrease her dosage to 9MGs daily! I can't wait until we're on 6MGs- that's where they say the weight will really start to drop off. One wonderful thing about the steroids is that she finally eats!!! This is the kid that wouldn't eat much of anything, who wouldn't try new things, who ate like a bird. Now this is the girl that carries one lunch menu around in her backpack, has one next to her bed, frequently reads them in an anticipatory fashion, and talks non-stop about food! Before we tried everything to get her to gain weight, but now we may have to worry about her gaining too much! It's better than being 42lbs at age 9, right? She's earned a new nickname: Sharky! :) She's so funny! We are soooo blessed! She's had a few joint issues, but nothing major. Her Remicade is increasing at her next appointment. Hopefully that will do the trick. My only worry is that she should be seen the first Tuesday of April but it will now be the 2nd Tuesday because all of the docs will be out of the office that whole week. She usually starts to hurt the day before, so I hope this doesn't result in a flare.
I have got to get to bed! Have a wonderful Monday! :)
Tuesday, February 22, 2011
What a crazy week!!!
Well, probably 2 weeks is more accurate. Has it been that long? I guess so!
I shall start with getting Emily's chair. You know that things are rough when you're excited about getting your child a new wheelchair. However, this opens us up to be able to do several things that we haven't been able to do. Things like, go for a long walk in the woods. The new chair can handle that! Go to a fair or other place that would have us walking around a lot. Granted, we had a chair before, but for one it was "an old people's chair". She never complained, she just didn't feel comfortable. Also, there was no restraint. She felt like she was going to fall out. So this was very exciting! We are hoping to be able to go to the Renaissance Fair when it comes to town. We will definitely need a good chair for that. (If we wait until March 20th we can renew our wedding vows- just in time for our 15th anniversary on April 5th!)
Kevin had the appointment made for him to go in for his radiation, only to be told that the doctor that made it didn't know the whole situation, and his thryoid counts weren't low enough. Our doc canceled the appointment, telling him to get more labs done on Wednesday. Of course, being without meds while they wait for levels is making him feel like the human slug- sluggish, swollen, forgetful, cranky and sore. Not too much fun. He's holding up well, but only because there isn't really much of a choice. He forgot to do labs on Wednesday, and by Thursday we had a sick boy. DangerBoy stayed home from school Thursday & Friday both, so Kevin didn't go to the lab until Friday. (By that point our boy felt a little better and wouldn't be contagious.) We're hoping that they will call tomorrow to schedule him. We shall see!
My father went in for the angioplasty to find that it wasn't a stent that he needed. I was very concerned because so many other things around this time seemed to be falling apart for other people. It almost seemed taboo. It turned out that, in his words, there was a kink in the artery. ????? I don't get it, but that's what he said. I've asked him to find out the medical terminology so that I can research it. The good news is that he's fine! My mother had taken the info to give me at first, but she messed it all up out of nerves. She told me there was a 40% blockage but they weren't going to do anything about it, and that he had to stay overnight because they had given him something and had to watch him. Yeah, they gave him a hole in his groin and a six inch metal wand to go inside of the hole! It was a very confusing, stressful day. By the grace of God, he's home and doing great now!
Next came the letter from Make-A-Wish foundation! They sent a parent packet so that you know what to expect, what we will need to have, and so on. We still had some questions, but we figured we would wait until they called to ask.
I believe it was the next day that I watched a pedestrian get hit by a car. I have been trying to find some news on her condition, but so far nothing. The day that it happened I held it together really well. That's the great thing about constant medical chaos and perpetual stress- you handle trauma very well. The next morning I couldn't get the images out of my head. Thank God I didn't see the entire thing. I watched her cross the road most of the way, then I turned my attention to the traffic light. I heard the noise, looked up and saw her flying. I know I didn't have to stop- technically I didn't see the whole thing, but I knew enough to be able to tell them that the driver couldn't possibly have seen her. She didn't seem to realize that the turn lane didn't stop. She just ran right into the car. It turned even more nightmarish after her husband came over, obviously distraught, and yelled out to the paramedics that she was one month pregnant. Yes, I know it could have been worse, but it was horrible. Like a scene out of "Final Destination".
Friday & Saturday this week were unremarkable! I love those days... Sunday after work was wonderful! We went over to Kevin's aunt's house for his grandmother's 93rd birthday. Poor Grandma now has poor memory added to the poor hearing & vision, but she's so sweet, so full of stories. It was a very pleasant evening spent with family that we really don't see often enough. We always have such chaos. It's work, or medical or kids. We're just so busy! It's hard to find the right balance, but at least we make some time.
Lastly, tonight a Make-A-Wish volunteer called to make our appointment! I went into my room to talk to her, knowing that I would break down a little talking to her. I asked her- just to clarify- if our doctor had sent her blessings already. Just to be clear. I had assumed so, but this is so, so good that I didn't want to get Em's hopes up only to have them crushed. She assured me that yes, we are cleared. I cried. I know that this will give her something to look forward to, and then later it will give her lifelong memories. And they will take good care of her, and our other children! Emily has her heart set on going to Disney World here. She's always wanted to fly so I've been trying to convince her to fly to Disney Land if she wants to do Disney, but I also told her that it's her choice & I don't care what she wants to do. If she is dead set on Disney here, there is another fantastic non-profit that I discovered on my Juvenile Myositis Facebook group. Give Kids the World focuses on completely spoiling the family during their stay. I've been trying to help her to understand that she can pick ANY wish that she desires. Some kids have gone to Puerto Rico, some to swim with the dolphins. Others have met their favorite star, gone to an event, traveled to Oregon in an RV, had a bedroom make-over. As long as it's something that makes her happy we're good.
I'm not sure where we stand on her health right now. She said the other night that her arm hurt, but she couldn't tell if it was her elbow or her upper arm. Today it was definitely the upper arm, in the muscles. Her legs are good though, with the exception of the rash flaring up again on her knees. Today it looked almost purple. Most days it's puffy pink. I'm taking my notes and debating on what to do. Tonight was her Methotrexate injection. I'm hoping that will help and she'll be fine. Otherwise, I think we'll have to go back up to 6MLs (18MGs) of Prednisone. I really don't want to do that. I know that she doesn't either. I'm hoping to prevent it. We shall see.
Tomorrow I also meet up with fellow blogger & JA mom! We've been talking on Facebook and occasionally on the phone for quite some time now. It will be so good to meet! Can't wait!
I shall start with getting Emily's chair. You know that things are rough when you're excited about getting your child a new wheelchair. However, this opens us up to be able to do several things that we haven't been able to do. Things like, go for a long walk in the woods. The new chair can handle that! Go to a fair or other place that would have us walking around a lot. Granted, we had a chair before, but for one it was "an old people's chair". She never complained, she just didn't feel comfortable. Also, there was no restraint. She felt like she was going to fall out. So this was very exciting! We are hoping to be able to go to the Renaissance Fair when it comes to town. We will definitely need a good chair for that. (If we wait until March 20th we can renew our wedding vows- just in time for our 15th anniversary on April 5th!)
Kevin had the appointment made for him to go in for his radiation, only to be told that the doctor that made it didn't know the whole situation, and his thryoid counts weren't low enough. Our doc canceled the appointment, telling him to get more labs done on Wednesday. Of course, being without meds while they wait for levels is making him feel like the human slug- sluggish, swollen, forgetful, cranky and sore. Not too much fun. He's holding up well, but only because there isn't really much of a choice. He forgot to do labs on Wednesday, and by Thursday we had a sick boy. DangerBoy stayed home from school Thursday & Friday both, so Kevin didn't go to the lab until Friday. (By that point our boy felt a little better and wouldn't be contagious.) We're hoping that they will call tomorrow to schedule him. We shall see!
My father went in for the angioplasty to find that it wasn't a stent that he needed. I was very concerned because so many other things around this time seemed to be falling apart for other people. It almost seemed taboo. It turned out that, in his words, there was a kink in the artery. ????? I don't get it, but that's what he said. I've asked him to find out the medical terminology so that I can research it. The good news is that he's fine! My mother had taken the info to give me at first, but she messed it all up out of nerves. She told me there was a 40% blockage but they weren't going to do anything about it, and that he had to stay overnight because they had given him something and had to watch him. Yeah, they gave him a hole in his groin and a six inch metal wand to go inside of the hole! It was a very confusing, stressful day. By the grace of God, he's home and doing great now!
Next came the letter from Make-A-Wish foundation! They sent a parent packet so that you know what to expect, what we will need to have, and so on. We still had some questions, but we figured we would wait until they called to ask.
I believe it was the next day that I watched a pedestrian get hit by a car. I have been trying to find some news on her condition, but so far nothing. The day that it happened I held it together really well. That's the great thing about constant medical chaos and perpetual stress- you handle trauma very well. The next morning I couldn't get the images out of my head. Thank God I didn't see the entire thing. I watched her cross the road most of the way, then I turned my attention to the traffic light. I heard the noise, looked up and saw her flying. I know I didn't have to stop- technically I didn't see the whole thing, but I knew enough to be able to tell them that the driver couldn't possibly have seen her. She didn't seem to realize that the turn lane didn't stop. She just ran right into the car. It turned even more nightmarish after her husband came over, obviously distraught, and yelled out to the paramedics that she was one month pregnant. Yes, I know it could have been worse, but it was horrible. Like a scene out of "Final Destination".
Friday & Saturday this week were unremarkable! I love those days... Sunday after work was wonderful! We went over to Kevin's aunt's house for his grandmother's 93rd birthday. Poor Grandma now has poor memory added to the poor hearing & vision, but she's so sweet, so full of stories. It was a very pleasant evening spent with family that we really don't see often enough. We always have such chaos. It's work, or medical or kids. We're just so busy! It's hard to find the right balance, but at least we make some time.
Lastly, tonight a Make-A-Wish volunteer called to make our appointment! I went into my room to talk to her, knowing that I would break down a little talking to her. I asked her- just to clarify- if our doctor had sent her blessings already. Just to be clear. I had assumed so, but this is so, so good that I didn't want to get Em's hopes up only to have them crushed. She assured me that yes, we are cleared. I cried. I know that this will give her something to look forward to, and then later it will give her lifelong memories. And they will take good care of her, and our other children! Emily has her heart set on going to Disney World here. She's always wanted to fly so I've been trying to convince her to fly to Disney Land if she wants to do Disney, but I also told her that it's her choice & I don't care what she wants to do. If she is dead set on Disney here, there is another fantastic non-profit that I discovered on my Juvenile Myositis Facebook group. Give Kids the World focuses on completely spoiling the family during their stay. I've been trying to help her to understand that she can pick ANY wish that she desires. Some kids have gone to Puerto Rico, some to swim with the dolphins. Others have met their favorite star, gone to an event, traveled to Oregon in an RV, had a bedroom make-over. As long as it's something that makes her happy we're good.
I'm not sure where we stand on her health right now. She said the other night that her arm hurt, but she couldn't tell if it was her elbow or her upper arm. Today it was definitely the upper arm, in the muscles. Her legs are good though, with the exception of the rash flaring up again on her knees. Today it looked almost purple. Most days it's puffy pink. I'm taking my notes and debating on what to do. Tonight was her Methotrexate injection. I'm hoping that will help and she'll be fine. Otherwise, I think we'll have to go back up to 6MLs (18MGs) of Prednisone. I really don't want to do that. I know that she doesn't either. I'm hoping to prevent it. We shall see.
Tomorrow I also meet up with fellow blogger & JA mom! We've been talking on Facebook and occasionally on the phone for quite some time now. It will be so good to meet! Can't wait!
Saturday, February 12, 2011
Addressing the inaccuracies
I had the misfortune of reading an "education article on juvenile arthritis". Unfortunately, reading this was akin to how I would imagine reading a JA article in the National Enquirer would be. The educational content was significantly lacking at best, downright ignorant & hurtful to the cause at worst. As a parent of a child that has had arthritis for several years now, I have seen, read, and had conversations that absolutely floored me, but this one still has me angry a week later. The link to this misinforming JA article is here. If not for copywrite laws I would copy & paste it. Apparently, the "doctor" that wrote the article writes these and leaves them on his blog. The majority of his writing is riddled with errors; some advice is dangerous in other articles.
What makes me angry is that this man has no medical training as a pediatric rheumatologist, or in rheumatology at all. He is writing about the same preconceived notions without doing the research that anyone with an opinion could write, but because he has doctor in his title, people are more likely to believe him. This can be very detrimental when the subject is something like JA. We fight so hard to raise awareness, trying to let people know that AutoImmune Arthritis is not because the joints are wearing out from use or old age. AA is an AutoImmune disease; the body is attacking itself! No one knows why this happens.
The first (intro) paragraph is innocent enough, though they don't call Juvenile Arthritis "Juvenile Rheumatoid Arthritis" anymore. Studies show that most children do not have a positive Rheumatoid Factor; children that do generally have other issues, such as Mixed Connective Tissue Disease. I'll let that slide because some old school docs still refer to it as JRA. (I prefer Juvenile AutoImmune Arthritis, though that is not what the experts call it. It's easier to say that and have people actually understand as opposed to making comments based on ignorance because they think they understand.) Perhaps it's because he doesn't know that the Arthritis Foundation has 100+ different disease that fall under the umbrella of arthritis, including Raynaud's Phenomenon, Mixed Connective Tissue Disease, Lupus, Dermatomyositis, Polymyositis, Behçet’s disease, Lyme's Disease, Tendonitis, Wegener's granulomatosis, Scleroderma, etcetera. These diseases are all different, yet they are all forms of arthritis. Yes, children can get them all.
From paragraph number two, the first thing that struck me is that every article in the past that I've read said that most children are generally diagnosed around 18 months because that is when the child is walking, and often seems to be struggling to walk. Symptoms can appear at any time. I've never read that boys symptoms show after girls. That could be correct, but I could neither prove nor disprove that one. I personally don't believe that is true.
"JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time." The first thing that I have to laugh about here is this: AutoImmune disorders are a result of an over-active immune system. This would be why these children are put on drugs like Methotrexate, Enbrel, Remicade & Humira, which are all immune suppressors. Some children are lucky enough to have it "disappear", otherwise known as remission. They are not "cured". Many of the children that had JA when I was growing up are the same people that now suffer in silence, told that they can't be sick because we can't see it. How many people do you know of that had Lupus just go away?
This doctor admits that we don't know what causes JA, but he believes it's due to an energy imbalance caused by the spleen & liver. Hmmm, some systemic cases may have those organs involved, but most people that I know do not have any organ involvement. He goes on to say that the weather on the day of conception plays a part, as does the energy of the parents on that day. So, if you're having a bad day and it's raining out when you're child is conceived you are much more likely to have a child with arthritis? Somehow, I think not. He seems to place a lot of blame on the parents. I can honestly say that I did everything right during my pregnancy with my JA child. I didn't drink or do drugs (and still don't, thank you!). I quit smoking, I ate right, got enough sleep, babied myself to a degree, tried to stay away from any stressful situations. I did everything right. So, this is my fault? If any of my children should have gotten JA then, it would have been my oldest. My doctors advised me to keep smoking since I had a lot of stress, I didn't do any drugs or drink with her either, but I was pretty stupid about nutrition. I certainly could have done better. And she's perfect. Go figure.
He believes that better nutrition would benefit. Though that makes a lot of sense, there are no studies that prove that diet has a hand in any of this. There are specific foods that help reduce inflammation, and others that can cause it (like the nightshade plants- no peppers or potatoes, if I remember correctly). In the beginning I did a ton of research on this, hoping that I could maybe make it disappear through better diet. Aside from that info, the best that I could come up with is that many people with AutoImmune Arthritis also have other AI diseases that affect their digestive system. Many are gluten sensitive and feel much better with a gluten-free diet. Some can't digest sugars properly either, and they feel better cutting sweets out entirely.
The last thing that I will pick apart for now is that this man claims that positive thinking "also plays a big role in the speedy outgrowing of JRA". Ok, I do believe that positive thinking does a LOT of good, but I do not believe that you can cure yourself that way. I also believe in the power of prayer, but that doesn't mean that Jesus Christ is going to come and cure my child just because I ask Him to. He has a plan, it is perfect, I have no idea what it entails, & so I will not always get my way. I realize that Oriental medicine is much different than traditional US medicine. I know nothing about Oriental medicine partially because I have not trained in it and I do not just decide without fact-finding that something should or should not be true. However, I believe that if you're going to write an article on a condition that affects any group in the USA, you should do some research on some material written & proven true in the USA.
On a side note, Emily's new wheelchair came in! We are very happy about this. I am thrilled that it came in before a myositis flare left her incapable of walking, for one. Obviously, we are hoping that will never happen, but since the odds are not in our favor we felt like getting a chair in quickly would be for the best. Currently her endurance and stamina are not good. She tries very hard, but if we have a lot of walking to do she simply can't do it. Walking from the car to her doctor's office at the hospital wears her out. We use the chair to get the the parking garage on one side to her doctor upstairs and at the opposite end. If we happen to go to the mall (which is very rare, thankfully) she can't handle that. Partially it's because her legs can't do it, but also because the steroids have puffed her out so badly that she can't get comfortable. Of course, she went from 42 lbs to 62 lbs in a month. I think 30% went to her face, 50% went to her belly, and the rest got spread out. Her belly went from not having an extra ounce to looking like she was due with twins any day. That does not make it easy to move. Her feet are having a rough time adjusting, too. It's a lot of extra weight added very quickly. Still, she's very blessed. Many JM kids are still bedridden for months and months. She was only mostly down for about 2 months; at her worst she could still drag herself across the house to the bathroom. Many kids can't. I shall leave with a new pic of Em in her chair :) We had just gotten her out of her bath; I hadn't had a chance to comb her hair or anything yet. We were rushing to get her into bed, but I really wanted to get it set up in case we're in a hurry the next time we need it. The pictures were an afterthought.
What makes me angry is that this man has no medical training as a pediatric rheumatologist, or in rheumatology at all. He is writing about the same preconceived notions without doing the research that anyone with an opinion could write, but because he has doctor in his title, people are more likely to believe him. This can be very detrimental when the subject is something like JA. We fight so hard to raise awareness, trying to let people know that AutoImmune Arthritis is not because the joints are wearing out from use or old age. AA is an AutoImmune disease; the body is attacking itself! No one knows why this happens.
The first (intro) paragraph is innocent enough, though they don't call Juvenile Arthritis "Juvenile Rheumatoid Arthritis" anymore. Studies show that most children do not have a positive Rheumatoid Factor; children that do generally have other issues, such as Mixed Connective Tissue Disease. I'll let that slide because some old school docs still refer to it as JRA. (I prefer Juvenile AutoImmune Arthritis, though that is not what the experts call it. It's easier to say that and have people actually understand as opposed to making comments based on ignorance because they think they understand.) Perhaps it's because he doesn't know that the Arthritis Foundation has 100+ different disease that fall under the umbrella of arthritis, including Raynaud's Phenomenon, Mixed Connective Tissue Disease, Lupus, Dermatomyositis, Polymyositis, Behçet’s disease, Lyme's Disease, Tendonitis, Wegener's granulomatosis, Scleroderma, etcetera. These diseases are all different, yet they are all forms of arthritis. Yes, children can get them all.
From paragraph number two, the first thing that struck me is that every article in the past that I've read said that most children are generally diagnosed around 18 months because that is when the child is walking, and often seems to be struggling to walk. Symptoms can appear at any time. I've never read that boys symptoms show after girls. That could be correct, but I could neither prove nor disprove that one. I personally don't believe that is true.
"JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time." The first thing that I have to laugh about here is this: AutoImmune disorders are a result of an over-active immune system. This would be why these children are put on drugs like Methotrexate, Enbrel, Remicade & Humira, which are all immune suppressors. Some children are lucky enough to have it "disappear", otherwise known as remission. They are not "cured". Many of the children that had JA when I was growing up are the same people that now suffer in silence, told that they can't be sick because we can't see it. How many people do you know of that had Lupus just go away?
This doctor admits that we don't know what causes JA, but he believes it's due to an energy imbalance caused by the spleen & liver. Hmmm, some systemic cases may have those organs involved, but most people that I know do not have any organ involvement. He goes on to say that the weather on the day of conception plays a part, as does the energy of the parents on that day. So, if you're having a bad day and it's raining out when you're child is conceived you are much more likely to have a child with arthritis? Somehow, I think not. He seems to place a lot of blame on the parents. I can honestly say that I did everything right during my pregnancy with my JA child. I didn't drink or do drugs (and still don't, thank you!). I quit smoking, I ate right, got enough sleep, babied myself to a degree, tried to stay away from any stressful situations. I did everything right. So, this is my fault? If any of my children should have gotten JA then, it would have been my oldest. My doctors advised me to keep smoking since I had a lot of stress, I didn't do any drugs or drink with her either, but I was pretty stupid about nutrition. I certainly could have done better. And she's perfect. Go figure.
He believes that better nutrition would benefit. Though that makes a lot of sense, there are no studies that prove that diet has a hand in any of this. There are specific foods that help reduce inflammation, and others that can cause it (like the nightshade plants- no peppers or potatoes, if I remember correctly). In the beginning I did a ton of research on this, hoping that I could maybe make it disappear through better diet. Aside from that info, the best that I could come up with is that many people with AutoImmune Arthritis also have other AI diseases that affect their digestive system. Many are gluten sensitive and feel much better with a gluten-free diet. Some can't digest sugars properly either, and they feel better cutting sweets out entirely.
The last thing that I will pick apart for now is that this man claims that positive thinking "also plays a big role in the speedy outgrowing of JRA". Ok, I do believe that positive thinking does a LOT of good, but I do not believe that you can cure yourself that way. I also believe in the power of prayer, but that doesn't mean that Jesus Christ is going to come and cure my child just because I ask Him to. He has a plan, it is perfect, I have no idea what it entails, & so I will not always get my way. I realize that Oriental medicine is much different than traditional US medicine. I know nothing about Oriental medicine partially because I have not trained in it and I do not just decide without fact-finding that something should or should not be true. However, I believe that if you're going to write an article on a condition that affects any group in the USA, you should do some research on some material written & proven true in the USA.
Thursday, February 3, 2011
Infusion, Dr. visit & first Myositis flare
As it nears Remicade infusion day, the tension tends to build. By the day before, Em & I are both a little crazy. Monday night I was laying down watching TV when I heard crying. I went to go investigate, & found Em sitting on her floor sobbing hard. I sat & held her, talking to her, getting her tissues, cuddling. Why so sad? She was terrified to go. It is absolutely heartbreaking to watch her get so upset about something that she needs- especially when it's something that kids shouldn't have to go through.
The drive up is always kind of somber. She looks like she's going for her execution or something. On our way up, I heard Mandisa's latest release, "Stronger". I cannot explain to you on how many levels this touched me. For me, for her. It seemed to hit on exactly what we were going through. It's amazing how God can work in our lives, putting in front of us just what we need, when we need it. That is how this song felt.
After we parked, I asked her if she thought she could walk across the street and hospital or if she'd need her chair. She said that her legs felt tired. Um-hmm. Putting the puzzle pieces together, thinking about how her knees looked bright red but didn't hurt. I thought it was my imagination that her elbows were looking more red. Once we got into the check-in area, she was called back quickly. I asked right away if Jason, the one guy that can get her on the first stick, was available. Our lucky day- he had just come off of lunch! I was a little worried at first. He couldn't find a good vein. The one that he could feel was deep and they didn't think they could reach it. Somehow, he managed to get it on the first try, plus they were able to draw blood from it without it collapsing! What a relief when that was over! Of course, her blood pressure ran high the whole time. I was a little worried about that since she's on medicine for it. (And by the way, her Raynaud's has been flare free!!!!! Wahoo!)
Here's where she got mad at me: I pointed out to the nurse practitioner that her knees were bright pink and puffy, but she claimed they didn't hurt. Her face rash looked ok, but that isn't the only marker. Sure enough, the nurse practitioner said that it looked like a flare, probably brought about because Emily had bronchitis & a cold. I guess she was afraid to see the doctor, knowing that she was flaring. When she came in and tried to look at her knees, Emily screamed at her in a way that I've never seen her do before. She claimed it was because her hands were cold. I was embarrassed! It was vicious sounding! I found out the real why later. I took Emily to the bathroom a little later & she asked me if she was staying over. She seemed unconvinced when I told her no. So I asked her, "you knew that your JM was flaring, didn't you? Is that why you didn't want to come today?" Yup, that was it. She was afraid that she would be kept as inpatient because she was flaring. Poor little kid! I think that subconsciously I knew that she was flaring. I have tried hard to prepare myself for the fact that this will most likely be something to come & go for many, many years to come, but I think a part of me has still been in complete denial that she's flaring.
In the end it turned out to be a good appointment. We are still able to decrease her Prednisone to 15mgs daily, while increasing her Methotrexate to .6 on the needle. I was very surprised about that! I was completely expecting to have to increase Prednisone, so that was a pleasant surprise. We even got out a little early! We were back home by 6:40 PM. Usually it's after 8 PM when we get back. At least the drive is scenic. I have wondered what it will look like through the spring and summer :) I don't look forward to the long drive, but I do enjoy the views!
Last thing- She was talking to her Daddy this morning in the kitchen, telling him what her legs felt like. She says they feel like there's metal in them, they're heavy. Right now it's just in her legs. We had another nice chat about being honest with us about how she feels. I tried to explain to her that I read so much in books, on the internet, and in my Facebook support groups that I pretty much know what's going on. Yes, I will have questions that I cannot answer myself or via FB, but I have a pretty good idea of what's going to happen. If she had been honest with me, I could have told her what I thought the doctor would do. I could have helped with a lot of the fear... if she had let me. We all have a cold right now, except for Gir. I'm barely functional right now, but we keep it together.
The drive up is always kind of somber. She looks like she's going for her execution or something. On our way up, I heard Mandisa's latest release, "Stronger". I cannot explain to you on how many levels this touched me. For me, for her. It seemed to hit on exactly what we were going through. It's amazing how God can work in our lives, putting in front of us just what we need, when we need it. That is how this song felt.
After we parked, I asked her if she thought she could walk across the street and hospital or if she'd need her chair. She said that her legs felt tired. Um-hmm. Putting the puzzle pieces together, thinking about how her knees looked bright red but didn't hurt. I thought it was my imagination that her elbows were looking more red. Once we got into the check-in area, she was called back quickly. I asked right away if Jason, the one guy that can get her on the first stick, was available. Our lucky day- he had just come off of lunch! I was a little worried at first. He couldn't find a good vein. The one that he could feel was deep and they didn't think they could reach it. Somehow, he managed to get it on the first try, plus they were able to draw blood from it without it collapsing! What a relief when that was over! Of course, her blood pressure ran high the whole time. I was a little worried about that since she's on medicine for it. (And by the way, her Raynaud's has been flare free!!!!! Wahoo!)
Here's where she got mad at me: I pointed out to the nurse practitioner that her knees were bright pink and puffy, but she claimed they didn't hurt. Her face rash looked ok, but that isn't the only marker. Sure enough, the nurse practitioner said that it looked like a flare, probably brought about because Emily had bronchitis & a cold. I guess she was afraid to see the doctor, knowing that she was flaring. When she came in and tried to look at her knees, Emily screamed at her in a way that I've never seen her do before. She claimed it was because her hands were cold. I was embarrassed! It was vicious sounding! I found out the real why later. I took Emily to the bathroom a little later & she asked me if she was staying over. She seemed unconvinced when I told her no. So I asked her, "you knew that your JM was flaring, didn't you? Is that why you didn't want to come today?" Yup, that was it. She was afraid that she would be kept as inpatient because she was flaring. Poor little kid! I think that subconsciously I knew that she was flaring. I have tried hard to prepare myself for the fact that this will most likely be something to come & go for many, many years to come, but I think a part of me has still been in complete denial that she's flaring.
In the end it turned out to be a good appointment. We are still able to decrease her Prednisone to 15mgs daily, while increasing her Methotrexate to .6 on the needle. I was very surprised about that! I was completely expecting to have to increase Prednisone, so that was a pleasant surprise. We even got out a little early! We were back home by 6:40 PM. Usually it's after 8 PM when we get back. At least the drive is scenic. I have wondered what it will look like through the spring and summer :) I don't look forward to the long drive, but I do enjoy the views!
Last thing- She was talking to her Daddy this morning in the kitchen, telling him what her legs felt like. She says they feel like there's metal in them, they're heavy. Right now it's just in her legs. We had another nice chat about being honest with us about how she feels. I tried to explain to her that I read so much in books, on the internet, and in my Facebook support groups that I pretty much know what's going on. Yes, I will have questions that I cannot answer myself or via FB, but I have a pretty good idea of what's going to happen. If she had been honest with me, I could have told her what I thought the doctor would do. I could have helped with a lot of the fear... if she had let me. We all have a cold right now, except for Gir. I'm barely functional right now, but we keep it together.
Sunday, January 30, 2011
Since I get asked a lot about Raynaud's
One problem that can go hand in hand with several different diseases that are covered under the spectrum of arthritis is Raynaud's Phenomenon. Raynaud's is an over-reaction to the cold. The blood vessels constrict from simple things like being in air conditioning or holding a cold glass of water. The classic signs are the color draining out of the affected hand (or foot, nose, or ear) which turns the area bright white, then turning purple or blue as blood starts to fill in, then red as the blood comes rushing back in. It is painful, prickly, tingly, and causes numbness. There is primary Raynaud’s, in which case there are no other conditions, and there is secondary Raynaud’s- caused by some other disease such as Scleroderma, Mixed Connective Tissue Disease, and also found to be related somehow to Dermatomyositis. Secondary is generally considered to be more severe than primary. The best link that I have found to explain it is The National Heart, Lung, & Blood Institute. Also, The Raynaud's Association is a great place to find support and info.
It was only one year ago this month that my daughter was suffering a great deal from her Raynaud's Phenomenon. Her doctor at the time decided that she was too young for medicine, and that we could control it by keeping her core warm. We would pack her off daily in the winter with two T-shirts, a warm long sleeved shirt, jeans, mittens, and a very heavy winter coat. One would assume that would be enough for a sunny Florida winter, but not the case for my child. It was when she developed frostbite at school that I truly began to panic. This was a life changing disease for her. No longer could my sweet little princess wear her cute little dresses and skirts that she loved so much. Instead, we were piling as much extra clothing on her as possible, but it was never enough. Her school actually made a drill based off of an idea that my hubby had. He would take a sock, fill it with rice, and microwave it for a few seconds to a minute, depending on the size of the sock. The school had several of these socks, and they placed them strategically around the school. Whenever she had a particularly bad episode, they would run for the socks. I worried daily about frostbite, and the possibility of her losing her fingers because she tried to ignore it. The springtime wasn't as severe, but still she continued to have many episodes even when it was 85F outside. And still her doctor didn't think that she needed medication. Our new doctors gave her a prescription for a Calcium Channel Blocker just before the end of December. Even as a child that doesn't like to take medicines, she was afraid of what a cold winter would bring, and she requested it. I can't say that she hasn't had an episode since, but she has certainly had far less. In fact, I have only seen one. Today she can walk around the house in a nightgown or skirt without fear. We can go outside on a cold day without fearing the worst. Yes, she still gets much colder than other people, and she can’t warm back up that well, but it isn’t like it was. For that, I am very grateful. Her current doctors call her case of Raynaud's "significant". They could tell from a mile away that she had problems with it. Medication was the best decision that we could have made for her. Perhaps it wouldn't be the best course for everyone, but for us it has made a huge mountain look like a small hill.
With this time of year also comes bronchitis. I thought that we had her on enough preventatives to keep her under control, but I suppose that wasn’t a very realistic thought. She went to the doctor on Wednesday, but we plan on taking her back tomorrow. To complicate matters even more, she is due for her Remicade infusion on Tuesday! Remicade is an immune suppressor, so if she still has an infection it would be very detrimental. Since we have to drive 2 hours away for it… I’d like her pedi to clear her. This is her current medication list, with the bronchitis meds being the first 6.
Emily’s current meds as of January 30, 2011
Zithromyacin- 200MGs once daily
Singulair- 5MGs daily
Flovent- 44mcgs twice daily
Ventolin- Every 4-6 hours
Veramyst- One squirt each nostril nightly
Benadryl- 1.5 tsps (On request for congestion & cough at night)
Prednisolone- Take 18MG in the morning
Prilosec (Omeprazole) ONE capsule once daily
Meloxicam- 5 MLS (1 tsp) nightly
Nifedipine ER 30MG- One pill once daily
Xyzal- 5MG once nightly
Methotrexate- .5 Sub-Q once weekly
Leucovorin- 1 pill weekly 24 hours after MTX
Miralax- ½ Cap nightly
Multi-VitaminIV Infusions:
Remicade- Once monthly
Solu-Medrol- Once Monthly
17 meds. Now doesn’t that look like a good time? Poor kid takes more medicine in than food or drink, I think. This is what having an autoimmune disease does. And remember folks- she’s only 9. I'll post tomorrow after work about what her pedi says, or Tuesday after her appointment if she is cleared. Keep us in your prayers!
Monday, January 17, 2011
Lots of things to point your attention to!
I have had a lot of little ups & downs this weekend. I learned a neat little fact. Did you know that "the incidence of Juvenile Dermatomyositis in the United States is approximately 3 in one MILLION children per year"??? She can't catch a break but she can develop all sorts of rare diseases!!!
The more I read from my books & compare to Emily's previous lab reports, the more amazed I am at how long the Juvenile Dermatomyositis has likely been a factor. One thing that we have never been able to make any sense of I think I have figured out. Before Emily was diagnosed with JA, our pediatrician discovered that her liver enzymes were elevated. All summer and into the next school year we went for labwork every six weeks. Her enzymes continued to fluctuate over the past few years between normal & high. We had attributed some of this to Methotrexate use. Well, I discovered tonight that those same liver tests are the ones that tell when your muscle enzymes are elevated, as in the case with JDM! No one could have known back then, and she didn't show signs of JDM until this April., so I thought. It is likely back in 2007 her elevated counts were due to Mixed Connective Tissue Disease. MCTD comes with its own muscle inflammation similar to DM without actually being it fully. (Disease features) Her labs from this March were really high. Like, someone should have realized Houston! We have a problem! Especially since April started the downward spiral.. the 3 weeks in a 2 month period where she couldn't walk. However, since the liver enzymes could have been due to MTX, I'll let that one go. For now. I'd like to focus tonight on information.
I have found many things this week that I find very handy! The first is from the Arthritis Foundation's website. This link here is the 100+ diseases that are covered under the arthritis umbrella. MCTD, Raynaud's, Dermatomyositis are all included. Yes, really! For those of us that are unlucky enough to have to deal with JDM, we are blessed to have the Cure JM! team. Their site is very informative, and run by all volunteers. This non-profit was made my families that had children & grandchildren suffering from JDM. One amazing mom recently wrote a case study on JDM. I printed out a copy tonight to enclose with the letter that I send to our former rheumy's hospital affiliate. One of the books that I have been referring to lately was written by a few doctors, but also one of the founders of Cure JM! How did I recognize the name? She's on one of my Facebook boards. Another mom, trying hard to help her daughter take her meds on time & still try to have a "normal" life, invented a really cool pill holder.
Of course, it's not just about JDM. Emily has 5 different types of arthritis. The Arthritis Foundation has done a LOT of amazing things to help find a cure, treat, & prevent arthritis, but also to send children affected by these terrible chronic conditions to camp, as well as the Juvenile Arthritis Conference. (You can make donations to the Arthritis Foundation via my personal page for the walk in our area. Now there's another non-profit sweeping the nation. The awesome thing about them is that they are fighting not just for awareness... they are fighting to change the way that people view arthritis! I had posted their link days ago, but I'm really pretty excited about them, so I had to do it again. My awareness ribbon on Facebook was a blue & red ribbon. One side for arthritis, one side for Raynaud's. My verbage? "Kids get arthritis, too! Autoimmune & arthritis awareness!" The key to changing people's minds is by teaching them that it is an AUTOIMMUNE DISEASE!!! I'm so happy that someone else sees it the way that I do!
And finally... I leave you with a story. Not my story, but a story that has made a huge impact on everyone that reads it. This is the story of Jennifer Schott. Jennifer was diagnosed when she was only about two, and she passed away when she was 26. Without research, without new scientific advances in medications, this would likely be similar to the life that my daughter would have, along with the other 300,000 kids affected by one form or another of arthritis.
The more I read from my books & compare to Emily's previous lab reports, the more amazed I am at how long the Juvenile Dermatomyositis has likely been a factor. One thing that we have never been able to make any sense of I think I have figured out. Before Emily was diagnosed with JA, our pediatrician discovered that her liver enzymes were elevated. All summer and into the next school year we went for labwork every six weeks. Her enzymes continued to fluctuate over the past few years between normal & high. We had attributed some of this to Methotrexate use. Well, I discovered tonight that those same liver tests are the ones that tell when your muscle enzymes are elevated, as in the case with JDM! No one could have known back then, and she didn't show signs of JDM until this April., so I thought. It is likely back in 2007 her elevated counts were due to Mixed Connective Tissue Disease. MCTD comes with its own muscle inflammation similar to DM without actually being it fully. (Disease features) Her labs from this March were really high. Like, someone should have realized Houston! We have a problem! Especially since April started the downward spiral.. the 3 weeks in a 2 month period where she couldn't walk. However, since the liver enzymes could have been due to MTX, I'll let that one go. For now. I'd like to focus tonight on information.
I have found many things this week that I find very handy! The first is from the Arthritis Foundation's website. This link here is the 100+ diseases that are covered under the arthritis umbrella. MCTD, Raynaud's, Dermatomyositis are all included. Yes, really! For those of us that are unlucky enough to have to deal with JDM, we are blessed to have the Cure JM! team. Their site is very informative, and run by all volunteers. This non-profit was made my families that had children & grandchildren suffering from JDM. One amazing mom recently wrote a case study on JDM. I printed out a copy tonight to enclose with the letter that I send to our former rheumy's hospital affiliate. One of the books that I have been referring to lately was written by a few doctors, but also one of the founders of Cure JM! How did I recognize the name? She's on one of my Facebook boards. Another mom, trying hard to help her daughter take her meds on time & still try to have a "normal" life, invented a really cool pill holder.
Of course, it's not just about JDM. Emily has 5 different types of arthritis. The Arthritis Foundation has done a LOT of amazing things to help find a cure, treat, & prevent arthritis, but also to send children affected by these terrible chronic conditions to camp, as well as the Juvenile Arthritis Conference. (You can make donations to the Arthritis Foundation via my personal page for the walk in our area. Now there's another non-profit sweeping the nation. The awesome thing about them is that they are fighting not just for awareness... they are fighting to change the way that people view arthritis! I had posted their link days ago, but I'm really pretty excited about them, so I had to do it again. My awareness ribbon on Facebook was a blue & red ribbon. One side for arthritis, one side for Raynaud's. My verbage? "Kids get arthritis, too! Autoimmune & arthritis awareness!" The key to changing people's minds is by teaching them that it is an AUTOIMMUNE DISEASE!!! I'm so happy that someone else sees it the way that I do!
And finally... I leave you with a story. Not my story, but a story that has made a huge impact on everyone that reads it. This is the story of Jennifer Schott. Jennifer was diagnosed when she was only about two, and she passed away when she was 26. Without research, without new scientific advances in medications, this would likely be similar to the life that my daughter would have, along with the other 300,000 kids affected by one form or another of arthritis.
Friday, January 14, 2011
Lots happening
A few nights ago, my oldest daughter found a picture of Emily that I had put in the scanner. It was from the last year around this time. She has a cute little smile, and she looks happy and well. Gir stood looking at this pic for a while, and then says "It's so sad but I forgot what she used to look like". We all had like a moment of silence. It's so hard to get used to this being her. She was once so petite, so little that we were trying to cram every calorie possible into her, and now her biggest obstacle is her steroid swollen tummy. We have accepted that she will never again look the same way, but it's sad. No, I don't feel that she's less beautiful, but this has been difficult on us all for so many reasons. Seeing her so uncomfortable, so sad about her own appearance, not able to run & be free like she'd like. She noted that her hair is darkening. She's FINALLY eating, at least! She came home from school yesterday announcing that she had tried tomato soup- and liked it! I about died! When she's off of the steroids, when she loses the water weight, she will likely have finally gained the weight that we've been waiting for, her hair will probably be brown. It's just so weird. She was changed so quickly that we barely had a chance to adjust. The changes in her meds are definitely helping. She seems to have a little more energy! Did I mention last update that she's been jumping a bit in her therapy sessions??? That is huge. And tonight she was trying to hurry her brother up. He was walking too slowly for her. That was also a first! I was very happy to hear that! The rash is almost gone. She's doing well for the most part. The only concern with her is that she says her chest is hurting on and off. It seems to be right in the middle, at the top of the bone. I don't think it's what the other kids seem to be complaining about lately, but I have a note to ask when we go back.
My son is the one we're watching right now. I have learned not to jump to conclusions. We watch, we observe, we research, we listen, we talk to the doctor. That said, I am not panicking, and I'm hoping I'm just being paranoid. I'm fairly certain that it's nothing, but... Ok, so he has psoriasis. He's had it since 2007-2008. Usually when he says his leg hurts or what not, it's usually said in a "I need more attention!" type of way. Recently we had a discussion about his handwriting being so bad. I asked him why it's pretty good sometimes but not often. He said his hands hurt. Hmmm. Ok. Well, they don't look inflammed. I noted it, but didn't dwell. Well, last night I happened to notice that his thumb nail looked funny. They say that nail bed changes and nail pitting are signs of psoriatic arthritis. I didn't say anything to him about it, but I was a little freaked out at how his nail bed looked white and bubbly and his nail looked abnormal. I came out to the living room to tell Kevin to check it out later. This morning when I got up he was already up. He said that his ankle hurt. He was limping a little bit. After a while I noted that he was able to put weight on it comfortably. I casually asked him about it a few more times, determined that it was probably fine, and put it in the back of my mind. Tonight as I was tucking him into bed, I asked how his ankle is. He said it's fine, but his foot hurt near the toe area. He said it hurt "in a circle"- both sides of the foot. Still not panicking, I am making a list of questions to ask his dermatologist. Thank God I made his appointment 6 months ago.
Last big thing to note, Kevin is on the low iodine diet that he needs to maintain in order to go in for his radiation. For those that are new or need a refresher on that one, he had his thyroid removed in March of 2009. When they took it, a pathologist found a teeny, tiny speck of cancerous cells. Generally, at that news most doctors would probably have done the radiation then, just to err on the side of caution. Well, it took so long to find this out and she was so not worried about it. Eventually, she decided that he should got for testing to make sure there were no cancerous cells in the area. The results showed "something". There was "uptake". I was a bit floored at this because she tells me at MY thyroid appointment when Kevin wasn't even with me, so I didn't think to ask some of the questions that I would have had I been prepared for this type of thing. Therefore, all we have to go on is my assumption that the cells are probably just abnormal and they want to blast them to be on the safe side. Fair enough. So, he has to go back off of his Synthroid, the one medicine that makes him feel human instead of like a dried up slug that's been thrown and then stepped on, switch to a med to wean off for a week and then go with no meds for another 2-3. Hopefully at that point his labs will be done and show the right amount of thyroid hormone so that he can go for the radiation. After that he'll have to stay off of the meds a little longer in order to have a total body scan as a final cancer check. And then maybe, just maybe after that, he can go back to having a life again. He's had to devote a large chunk of the last few months to his health & to Emily's since he was the one home. It was a very weird role reversal for him, and he's really looking forward to having his life back. I'm confident that this is all just a precaution and things will be "normal" again soon, though it's frustrating timing on his docs part. If she had proper follow through before this would have been done before we had other stuff in the way! Ah, well. Can't change it...
My son is the one we're watching right now. I have learned not to jump to conclusions. We watch, we observe, we research, we listen, we talk to the doctor. That said, I am not panicking, and I'm hoping I'm just being paranoid. I'm fairly certain that it's nothing, but... Ok, so he has psoriasis. He's had it since 2007-2008. Usually when he says his leg hurts or what not, it's usually said in a "I need more attention!" type of way. Recently we had a discussion about his handwriting being so bad. I asked him why it's pretty good sometimes but not often. He said his hands hurt. Hmmm. Ok. Well, they don't look inflammed. I noted it, but didn't dwell. Well, last night I happened to notice that his thumb nail looked funny. They say that nail bed changes and nail pitting are signs of psoriatic arthritis. I didn't say anything to him about it, but I was a little freaked out at how his nail bed looked white and bubbly and his nail looked abnormal. I came out to the living room to tell Kevin to check it out later. This morning when I got up he was already up. He said that his ankle hurt. He was limping a little bit. After a while I noted that he was able to put weight on it comfortably. I casually asked him about it a few more times, determined that it was probably fine, and put it in the back of my mind. Tonight as I was tucking him into bed, I asked how his ankle is. He said it's fine, but his foot hurt near the toe area. He said it hurt "in a circle"- both sides of the foot. Still not panicking, I am making a list of questions to ask his dermatologist. Thank God I made his appointment 6 months ago.
Last big thing to note, Kevin is on the low iodine diet that he needs to maintain in order to go in for his radiation. For those that are new or need a refresher on that one, he had his thyroid removed in March of 2009. When they took it, a pathologist found a teeny, tiny speck of cancerous cells. Generally, at that news most doctors would probably have done the radiation then, just to err on the side of caution. Well, it took so long to find this out and she was so not worried about it. Eventually, she decided that he should got for testing to make sure there were no cancerous cells in the area. The results showed "something". There was "uptake". I was a bit floored at this because she tells me at MY thyroid appointment when Kevin wasn't even with me, so I didn't think to ask some of the questions that I would have had I been prepared for this type of thing. Therefore, all we have to go on is my assumption that the cells are probably just abnormal and they want to blast them to be on the safe side. Fair enough. So, he has to go back off of his Synthroid, the one medicine that makes him feel human instead of like a dried up slug that's been thrown and then stepped on, switch to a med to wean off for a week and then go with no meds for another 2-3. Hopefully at that point his labs will be done and show the right amount of thyroid hormone so that he can go for the radiation. After that he'll have to stay off of the meds a little longer in order to have a total body scan as a final cancer check. And then maybe, just maybe after that, he can go back to having a life again. He's had to devote a large chunk of the last few months to his health & to Emily's since he was the one home. It was a very weird role reversal for him, and he's really looking forward to having his life back. I'm confident that this is all just a precaution and things will be "normal" again soon, though it's frustrating timing on his docs part. If she had proper follow through before this would have been done before we had other stuff in the way! Ah, well. Can't change it...
Friday, January 7, 2011
So much better than expected!
We were both so worried. The mood was very somber as we made the two hour drive to the hospital. It had only been two weeks since we last attempted her medication- and failed to find a good vein. She was terrified. I was worried as well. They had told us last time that many of the children that they see who are on high doses of steroids are too swollen to find a vein. They said that many times they need to have a port. A port is generally put in as a more permanent solution through a medical procedure. This way, when the patient goes in for blood work or infusions they don't have to get poked and prodded until a vein is found. It presents its share of risks. Infection, for one. They don't always work. Anyway, I was very worried that they wouldn't be able to find a vein again, and the talk would turn to ports. The hospital had called the day before the appointment to confirm. Since I was already worried myself and dreading the trip, I asked if a nurse named Jason would be there. After the other nurses have all tried- and failed- to find a vein, the go look for him. They assured me that he works Monday-Friday. Thank God! I told them how scared she was to go, and I suggested we have him try first. I was hoping that they wouldn't be hurt or offended by this. I really like and appreciate all of them. However, it only takes one bad experience to cause trauma!
We got there quite early! The waiting room was empty, but they warned me that the infusion room was on a wait. That's ok. We plan the whole day to be dedicated to her treatment when we go. They had her vitals checked and they sent us into a regular room to wait. I had just started to put down our stuff when we were called back! They said that they would start her needle in the room that they never actually use because Jason was hanging out in there. Thank GOD!!! After some tears on her part and careful consideration on his part, a vein was found! Unfortunately, he found it in a valve so they were only able to collect one vial of the 5 or 6 that they wanted, but it's more than they got last time. With that, they can at least check her liver enzymes, and her white cell count to make sure that the Methotrexate injections aren't causing a toxic reaction. It's weird when it's against a valve- it comes out all bubbly and foamy. I was a little freaked out seeing that, though I should be used to it. They tried again later to collect some blood, after the infusion but without poking her again! It failed :( They were happy that they got some of it. Trying to get it later was a smart move. It ended up blowing the vein. If they had attempted before the infusion and it had blown, that would have meant another poke. When she gets there, after the needle goes in, she's given Tylenol first by mouth, followed by Benadryl, because Remicade can cause headaches, fever, chills and other reactions. Next comes Salu-Medrol. In her case this is a main medicine for the Dermatomyositis. This is also often given to Juvenile Arthritis patients to prevent flare-ups and decrease inflammation. Last comes Remicade for the arthritis, but it's also third line for Dermatomyositis. We're usually there from noon or one to around 5 P.M.
She wasn't on the schedule to see the doctor, which I was a little sad about. Dr. M popped by anyway just to say hello. We chatted for a minute or two, and she went off to see if we were on the schedule. I explained how thrilled I was to have Emily on the Procardia (high-blood pressure medicine) for the Raynaud's. It has certainly helped! I told her about Emily laughing more and feeling better. She said that it may be because of the steroids truly kicking in, too. That may be! I forget to tell her that her physical therapist has had her jumping at the last 2 sessions! Her last session was an hour to try to make up for not being there while we were in Gainesville. She was tired at the end but she did it! I did manage to remember to tell the nurse practitioner when she came by to say hello. Heather is really cool! I remembered to tell her that despite the Procardia, Emily just that morning had a Raynaud's flare, but it has definitely helped a LOT. Also, this time her blood pressure was WAY down. Last time it was 153/ something. This time through several different readings it averaged around 113/85. Sooooooo much better!!! She also said that since it was prescribed now while her blood pressure is high, it will adjust with her so when she's off of the steroids it will still be ok to keep going despite normal blood pressure. That was a relief. I had wondered about that. She had said that even though she didn't have an appointment, they didn't want to leave us hanging with no Prednisone decrease, & that while the steroid doses are high, the decreases are more frequent. The lower the dosage goes, the less they decrease. So, this week we can cut back from 8 mls last week to 7 mls for the next two weeks, then to 6 mls for the two weeks after that. Each ml is 3 MGs. So, by February she will have been brought from 42MGs at the beginning to 18MGs! The way that this works is they start the steroid high and then lower it enough to wean off while adding in Methotrexate and increasing while the steroid is decreased. She's obviously doing much better now.
There are other issues. There always are, it seems. One of the worst things about the Dermatomyositis is the extreme fatigue. It causes so much muscle weakness and degeneration. It takes a long time to build the muscles back up, and since it takes so long to get the disease into remission, the muscles have plenty of time to deteriorate. Her rash is getting better and better but it isn't totally gone yet. It's so close that I can almost see it being pretty soon in the future, but we're not there yet. As well as she's doing, it certainly isn't comparable to healthy children. She can walk, she will push herself to walk all day at school, but she's exhausted. She can do a staircase, but it takes her a LONG time and she feels it for days after. She can't walk more than a few minutes without fatigue, and so we bring her wheelchair just about everywhere we go. If we go to the mall it comes with us. We take it to the hospital because it's a long walk from the van to the doctor's office & infusion room. She can't keep up easily. After the infusion she's exhausted! The Benadryl is partially to blame, the drive, & quite possibly the Remicade itself. It will take a while for the disease to go into remission so that she can build the muscles back up, but eventually she will. With the Mixed Connective Tissue Disease in the picture, she will likely have this happen again, but I have heard rumor that if it does it shouldn't be as bad again. I have 2 books on order, so hopefully I will find out more very soon. It's so rare that even Books A Million has no listing for "Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and Healthcare Provider". One library in my STATE has a copy, and only 11 nationwide. Wow. The other book sounds equally as stimulating- "A Parent's Guide to Rheumatic Disease in Children" by Thomas J.A. Lehman M.D. He's the same doctor that wrote "When It's Not Just Growing Pains". That was an excellent read!
At the same time that Emily is finally starting to recover, many other children are currently getting worse. Just our Florida bunch alone! We have one child whose diagnosis was changed to Systemic disease this week. That can be a terrifying, overwhelming prospect. I'm not sure how old that little one is, but I believe she's only 4 or 5. Also, there are 2 little ones that are suffering with severe abdominal problems. They both had colonoscopies this week. One shows many ulcers. They are waiting on a CT scan tomorrow to find out more, but the thought is IBD or Chron's Disease. The other family is forced to wait for a week. We have another child that they are trying to rule out Lymphoma on. But we all have to accept that since these diseases are autoimmune, often more autoimmune issues will pop up. (Sigh) Really, you just never know what to expect with these things. Crazy stuff happens, but until you are "seasoned" with this, you just don't expect it. Even when you expect it, it still never fails to amaze. Like not being able to wear shoes without socks. Or getting frostbite inside of school in Florida. (The arctic I could understand...) Many of these kids have Chron's, Colitis, severe allergies, fibromyalgia, etc.
And then there are the medications... You see, all of these medications come with side effects. These kids are on some heavy meds. Prednisone can cause cataracts, brittle bones, organ failure & eventual death if a close eye is not kept. Remicade & Enbrel can cause Leukemia, and a whole host of other problems. One of the children with the colonoscopy is almost blind. No, he wasn't born this way. His arthritis wasn't controlled well enough, his medicine dosage wasn't correct, and the steroids that he was on caused cataracts. He's 5. How is that fair? Yet, he's a very sweet, funny, smart little guy. It's so sad what these children go through. They are all such sweet, thoughtful, wonderful children. I truly believe that these kids are sweeter than most other children, more thoughtful because of all that they have to go through. They are little wise people. Little kids should be allowed to be just that. We have to find a cure, we have to find a way. Please, think on that. So few take arthritis seriously.
Monday, January 3, 2011
Happy New Year!!!
I'm sure I'm not the only one happy to have 2010 gone. I read so many different people's blogs that, while our year was truly ridiculous, I know that many, many people have had an even more difficult time. My heart goes out to those people. Crazy though my life may be, at least no one in my life has a terminal disease. For that I am extremely grateful, and blessed. And then there are the blessings that come when you are down and have been kicked a few times. They are generally so unexpected, so surprising and at just the right time that you just want to melt.
January started innocently enough with nothing indicating total insanity that I can recall. Actually, I don't remember the year being too bad until April. We were finally able to buy a new TV for February. That was good. March... March changed my life for the better. It was March that I met Tony W, Courtney A & Pam.
This opened up a whole new chapter of being able to help others, meet other families going through the same things, connect, and make new friends. This was like my light at the end of the tunnel. Suddenly, there were people that understood, that had great advice & compassion, people I could learn from and teach! And it made me realize that my dream of helping newly diagnosed families wasn't out of reach. All that I had needed was a forum and, well..... there it was.
Then April. During spring break is when suddenly Emily was unable to walk for about a week. All seemed ok after; we figured it was a typical flare and it would go away. This was also around the time that my illusions that she would stay on Enbrel forever and ever and life would be easy for her kind of crashed. Kind of in the way that pregnant mothers-to-be say "Oh, my child will never cry", my thinking was "No, my child will never flare." Oh, to be so naive again! Of course, back in April I thought she had "just" arthritis, Raynaud's & Scleroderma. (Like that wasn't bad enough all on its own!) She never fully recovered from this "flare", but she was mostly walking. Her endurance went down more & more.
May kept the downward spiral trend going. That is when Kevin lost his job. Scary blessing, really. I had prayed for it, actually. He hated his job. He was miserable. It needed to happen. Not the best economy for it, but ok. June was Cub Scout camp. That was fun, yet challenging. June also brought news that Kevin's thyroid doctor was worried about potentially dangerous cells. As a precaution, she wanted Kevin to stop taking the one medicine that controlled all of the hormones in his body for a month and go in for a bone scan. He felt like a slug for the next almost 2 months.
July was the JA Conference!!! This was a dream come true for me. I cannot tell you how much time I have poured in to researching her different conditions, all arthritis-related. I am sure that it is days by this point. To say that I was excited could be the understatement of the year. That was an awesome adventure for Emily & I! She missed her Boy too much to truly enjoy herself, and she was having a rough time, but it was still fun! It was great connecting with other parents that understood things.
August brought the new school year. That started off very well, until September. By September I knew that we had to make some medication changes fast. If we hadn't changed her meds then we would never have seen it. By the end of September Emily could barely walk. She started missing school, something that she really doesn't like to do. October brought her doctor totally blowing us off, changing doctors to one much further away from home, but much more caring! October brought the Juvenile Dermatomyositis (JDM) diagnosis and a 6 day hospital stay for Emily. She was kept for an MRI, which showed muscle damage, an Upper GI, a Pulminary Function test, plenty of labs, and daily SoluMedrol IV's. (500MG IV Steroids) She had her first IVIg infusion, her first Remicade infusion, and she really went down hill. She actually got worse for about a month. She also gained 20 lbs in a month from the high steroid dosage she was sent home with, called Cushing's Syndrome.
November brought the thyroid doctor saying, basically, "Hey! I know I should have called you back like 2 months ago, but I think it would be a great idea for you to be confined for 3-5 days and given high-dose radiation... just in case" to me during my appointment, but about Kevin. We devoted 80% of my appointment to planning out his treatments. November also brought Emily going back to school (she missed almost every day in October), and feeling a little better. Her teacher, God love her, bought Emily some shirts. How many teachers would do that??? I was sooooo touched! It also brought to her depression because of the Cushing's. Trying to find ways to make her happy became a hobby for us. We were also given a concrete diagnosis of Mixed Connective Tissue Disease, along with a prescription for a wheelchair, which our physical therapist handled for us. (We won't see her new chair until probably February, though.) Yes, she can walk, however she tires very quickly. She'll push herself to keep going at school, but if we're going out she just can't walk that much. She still has days where it's hard walk.
And then beautiful December. December started off a bit rough because she was still so unhappy that she couldn't even come up with a Christmas list until about a week before Christmas. By this point my family was so happy to just simply be together that no one really wanted much. This was the first Christmas that we had absolutely no idea what to buy for anyone. Her physical therapist at school made her a little care package for her birthday of some new clothes and fuzzy socks! She sooooooo loves those fuzzy socks :) Towards the end of December Em started to feel a little happier. What a blessing! She received a little Christmas care package from her physical therapist outside of school. Apparently, they are allowed to elect a patient or 2 that they think has earned it. Her PT elected her. Again, we were so touched. It really makes me weepy to see how many people will try to cheer up a sad, aching little girl, just because they can. This is why people need people. These people have touched her life in ways that we simply couldn't. And then came the BIG blessings, the ones that we simply couldn't believe. First, adding a med for her Raynaud's & decreasing her Prednisone helped give Emily some happiness! Our Secret Santa(s) that went way overboard when they didn't even have to. On one of the worst days, when we had driven the 2.5 hours to the hospital for her infusion only to not be able to find a vein, after poking her so many times with her crying and so upset, knowing I had bronchitis but no time to be sick... that's when they came. On the day that I really just felt like breaking down from stress and exhaustion- that's when they came. It wasn't about food, toys, cards, etc. It was that someone was so touched by what we were going through that they felt compelled to help. That's what Christmas is about, & I've always known that, but I never expected to be on this end of it. It couldn't have come at a better time. Needless to say, Christmas was wonderful, we had a lovely time enjoying the company of our family and friends, & I got the one thing that I wanted the most. Quite simply, I just wanted to hear my girl laugh. REALLY laugh, like hysterically. With her brother. Listening to them bicker like an old married couple, like they did before Prednisone. For once I didn't cook on Christmas. We didn't leave the house. It was perfect.
To leave the year behind, we went shoe shopping for the kids on New Year's Eve. Not only did they drive me crazy, but I realized exactly what a mess I have become. So, we're at the mall in the Disney Store. Of course, all of my kids are as excited as they would be if we were actually at Disney. I look up and see a sign saying "Happiest place on Earth". I'm sure that for many people it is, but I just cried. Yeah, I know. Crazy, eh? But I thought of how I just want them all to be happy, and then I thought of how happy they would all be at Disney, of Em at Disney, and how there's just no way we could do that right now. I don't usually get upset about what we can't do, but since my whole goal in life anymore is to make my sweet little bean happy... that just did it for me. I cried on and off almost the whole time we were in the store. At least 20-30 minutes. So, I am starting the new year off by finding something every day to find joy in. To look back on every day and think of the good things, forget about the bad. I want to count my blessings even more.
There's someone that I love whose daughter recently blessed him with a grandchild that is now 2 months old. The baby's father shook the baby while Mom was away. The baby is paralyzed now on her right side, as well as brain damaged. This makes me so sad, so angry, so heartbroken for them all. The dad has been arrested, but my friend's family is just dying for this child. Mom is a wreck, as is Grandpa. He doesn't want anyone to know so I won't name him, but this little baby needs prayers. This happened just before Christmas. This baby never had a chance. We all knew that Dad was a jerk, but we didn't think he was capable of something that horrendous. Please pray for this little one. That's one heck of a horrible way to end a year for them. And that alone makes our year look like a piece of cake, doesn't it? You just never know what tomorrow may bring.
January started innocently enough with nothing indicating total insanity that I can recall. Actually, I don't remember the year being too bad until April. We were finally able to buy a new TV for February. That was good. March... March changed my life for the better. It was March that I met Tony W, Courtney A & Pam.
This opened up a whole new chapter of being able to help others, meet other families going through the same things, connect, and make new friends. This was like my light at the end of the tunnel. Suddenly, there were people that understood, that had great advice & compassion, people I could learn from and teach! And it made me realize that my dream of helping newly diagnosed families wasn't out of reach. All that I had needed was a forum and, well..... there it was.
Then April. During spring break is when suddenly Emily was unable to walk for about a week. All seemed ok after; we figured it was a typical flare and it would go away. This was also around the time that my illusions that she would stay on Enbrel forever and ever and life would be easy for her kind of crashed. Kind of in the way that pregnant mothers-to-be say "Oh, my child will never cry", my thinking was "No, my child will never flare." Oh, to be so naive again! Of course, back in April I thought she had "just" arthritis, Raynaud's & Scleroderma. (Like that wasn't bad enough all on its own!) She never fully recovered from this "flare", but she was mostly walking. Her endurance went down more & more.
May kept the downward spiral trend going. That is when Kevin lost his job. Scary blessing, really. I had prayed for it, actually. He hated his job. He was miserable. It needed to happen. Not the best economy for it, but ok. June was Cub Scout camp. That was fun, yet challenging. June also brought news that Kevin's thyroid doctor was worried about potentially dangerous cells. As a precaution, she wanted Kevin to stop taking the one medicine that controlled all of the hormones in his body for a month and go in for a bone scan. He felt like a slug for the next almost 2 months.
July was the JA Conference!!! This was a dream come true for me. I cannot tell you how much time I have poured in to researching her different conditions, all arthritis-related. I am sure that it is days by this point. To say that I was excited could be the understatement of the year. That was an awesome adventure for Emily & I! She missed her Boy too much to truly enjoy herself, and she was having a rough time, but it was still fun! It was great connecting with other parents that understood things.
August brought the new school year. That started off very well, until September. By September I knew that we had to make some medication changes fast. If we hadn't changed her meds then we would never have seen it. By the end of September Emily could barely walk. She started missing school, something that she really doesn't like to do. October brought her doctor totally blowing us off, changing doctors to one much further away from home, but much more caring! October brought the Juvenile Dermatomyositis (JDM) diagnosis and a 6 day hospital stay for Emily. She was kept for an MRI, which showed muscle damage, an Upper GI, a Pulminary Function test, plenty of labs, and daily SoluMedrol IV's. (500MG IV Steroids) She had her first IVIg infusion, her first Remicade infusion, and she really went down hill. She actually got worse for about a month. She also gained 20 lbs in a month from the high steroid dosage she was sent home with, called Cushing's Syndrome.
November brought the thyroid doctor saying, basically, "Hey! I know I should have called you back like 2 months ago, but I think it would be a great idea for you to be confined for 3-5 days and given high-dose radiation... just in case" to me during my appointment, but about Kevin. We devoted 80% of my appointment to planning out his treatments. November also brought Emily going back to school (she missed almost every day in October), and feeling a little better. Her teacher, God love her, bought Emily some shirts. How many teachers would do that??? I was sooooo touched! It also brought to her depression because of the Cushing's. Trying to find ways to make her happy became a hobby for us. We were also given a concrete diagnosis of Mixed Connective Tissue Disease, along with a prescription for a wheelchair, which our physical therapist handled for us. (We won't see her new chair until probably February, though.) Yes, she can walk, however she tires very quickly. She'll push herself to keep going at school, but if we're going out she just can't walk that much. She still has days where it's hard walk.
And then beautiful December. December started off a bit rough because she was still so unhappy that she couldn't even come up with a Christmas list until about a week before Christmas. By this point my family was so happy to just simply be together that no one really wanted much. This was the first Christmas that we had absolutely no idea what to buy for anyone. Her physical therapist at school made her a little care package for her birthday of some new clothes and fuzzy socks! She sooooooo loves those fuzzy socks :) Towards the end of December Em started to feel a little happier. What a blessing! She received a little Christmas care package from her physical therapist outside of school. Apparently, they are allowed to elect a patient or 2 that they think has earned it. Her PT elected her. Again, we were so touched. It really makes me weepy to see how many people will try to cheer up a sad, aching little girl, just because they can. This is why people need people. These people have touched her life in ways that we simply couldn't. And then came the BIG blessings, the ones that we simply couldn't believe. First, adding a med for her Raynaud's & decreasing her Prednisone helped give Emily some happiness! Our Secret Santa(s) that went way overboard when they didn't even have to. On one of the worst days, when we had driven the 2.5 hours to the hospital for her infusion only to not be able to find a vein, after poking her so many times with her crying and so upset, knowing I had bronchitis but no time to be sick... that's when they came. On the day that I really just felt like breaking down from stress and exhaustion- that's when they came. It wasn't about food, toys, cards, etc. It was that someone was so touched by what we were going through that they felt compelled to help. That's what Christmas is about, & I've always known that, but I never expected to be on this end of it. It couldn't have come at a better time. Needless to say, Christmas was wonderful, we had a lovely time enjoying the company of our family and friends, & I got the one thing that I wanted the most. Quite simply, I just wanted to hear my girl laugh. REALLY laugh, like hysterically. With her brother. Listening to them bicker like an old married couple, like they did before Prednisone. For once I didn't cook on Christmas. We didn't leave the house. It was perfect.
To leave the year behind, we went shoe shopping for the kids on New Year's Eve. Not only did they drive me crazy, but I realized exactly what a mess I have become. So, we're at the mall in the Disney Store. Of course, all of my kids are as excited as they would be if we were actually at Disney. I look up and see a sign saying "Happiest place on Earth". I'm sure that for many people it is, but I just cried. Yeah, I know. Crazy, eh? But I thought of how I just want them all to be happy, and then I thought of how happy they would all be at Disney, of Em at Disney, and how there's just no way we could do that right now. I don't usually get upset about what we can't do, but since my whole goal in life anymore is to make my sweet little bean happy... that just did it for me. I cried on and off almost the whole time we were in the store. At least 20-30 minutes. So, I am starting the new year off by finding something every day to find joy in. To look back on every day and think of the good things, forget about the bad. I want to count my blessings even more.
There's someone that I love whose daughter recently blessed him with a grandchild that is now 2 months old. The baby's father shook the baby while Mom was away. The baby is paralyzed now on her right side, as well as brain damaged. This makes me so sad, so angry, so heartbroken for them all. The dad has been arrested, but my friend's family is just dying for this child. Mom is a wreck, as is Grandpa. He doesn't want anyone to know so I won't name him, but this little baby needs prayers. This happened just before Christmas. This baby never had a chance. We all knew that Dad was a jerk, but we didn't think he was capable of something that horrendous. Please pray for this little one. That's one heck of a horrible way to end a year for them. And that alone makes our year look like a piece of cake, doesn't it? You just never know what tomorrow may bring.
Subscribe to:
Posts (Atom)