Well, we did manage to get Emily in to see her pediatrician today. Despite it being a Monday, their busiest day, when Kevin called to make the appointment, upon hearing her name they found a way to get her in. I'm honored, yet terrified at that. We are on the first week of Prednisone decrease, and I'm happy to say that she hasn't gained any weight since Tuesday! She hasn't lost, but she hasn't gained. I take that as a blessing. I always wonder if I'm overreacting by taking her in with what others would think of as almost nothing. She has just been more tired, which could be from the steroid decrease or the JDM flaring back up. (She does have more active rash on her back and chest, and her fingers are looking red again. She said that her arms are tired again, and her legs, too.) Her nose has been crazy stuffed up. And she has a little cough at night. Could be from the steroid cushioning. But I always get that nagging. She's not technically sick, but our pedi could see it brewing. Upper respiratory or sinus infection, we caught it before it could sneak in. I can't believe we caught it so fast!
On our way out, our doc pulled me aside and told me that it was a bit of a shock seeing her that way. She told me how sorry she was, that she hated seeing her like this. I pointed out that, as heartbreaking as it may be, she is walking. It's going to be a long, hard road with no certainties or promises, but we'll make it. We always do. One day at a time. She reminded me to keep her out of recess and PE since large steroid doses can make your bones more brittle. Yeah, I'm not happy about that either, but I try to remain positive because it's the only way. And really, it could be so much worse. Not trying to sugar coat or downplay her condition. Just saying that we still have many ways in which we are blessed, and I try to count them all.
I finally dragged her out clothes shopping today. I had to promise her McDonald's, but we finally got her some new clothes. The poor little thing couldn't button her pants for a bit there, yet she still didn't want to go on the rare occasion that I had time to. I think she's still somewhat in denial. She doesn't want to see herself at her current weight. She misses her old things, and she's uncomfortable. I think buying new stuff was a bit permanent for her, but it needed to be done. Little boo should be set now for a while. One nice thing right now is that her Raynaud's isn't acting up. I'm worried about that, too, but I'm helping her to take advantage of it!
I'm a little curious about myself. It started with my elbow before taking that awful antibiotic. After a week on the Levaquin I couldn't get up in the morning, and both knees, elbows, hands, wrists and ankles felt like I was an RA patient. I've been off of it for a week now, and it is getting better but I'm still in pain, too. I had to take my wedding set off of my left hand. I thought that the pain was coming from there. That finger is very swollen, but the pain is coming from my middle finger and the middle of my hand. My wrists are still bad, and my right elbow. I had been wondering for a while because of my shoulder and elbow, and my hands locking up a few times before the medicine. It's probably coincidence, but when you live with RA around you every second I guess it makes sense to worry about. I don't have time to deal with my own issues right now. I will check into it soon.
Tuesday, November 30, 2010
Monday, November 29, 2010
Community
When I was a kid, I grew up watching "Little House on the Prairie". I was a bit obsessed, and as I grew older I read the whole series. Oh, how I wanted to be Laura Ingalls Wilder! I loved how the shows always showed the community spirit, how people worked together to help each other. The small town where I grew up was a little like this, but it was already the 1980's, and a far cry from the 1880's. Since moving to Florida in late 1991 I always felt a "community hole", never really finding anywhere that seemed to have a great support network. Then, my daughter got sick.
It's really sad that it takes having my child become chronically ill to find such a supportive community of such amazing, wonderful people. And yet, it has been such a blessing. I currently have a few of these going at the moment; I have some for the Juvenile Arthritis end, and some for the Juvenile Dermatomyositis side. Not once have a seen a 'snarky' comment, backstabbing, viciousness, or anything other than heartfelt, sincere love and support. I am so blessed by having these people in my life, most of whom I have not met. They are there to offer prayers, sympathy, advice, suggestions, or just listen if you feel the need to rant. These are people from all over the country, all with different levels of income and education. The difference is that we all love our children so much, want to help our children so much, but we know that we can do this best sometimes by reaching out and helping others. There are others who are the child reaching out to help parents understand, & those that have been the child but now understand the adult role and just want to help. Though in some big ways my heart is broken by Emily's diseases, another part of me has been made more whole because of them. If I could take them all on myself, take them away from her, I wouldn't even blink- I would just accept it. However, since that isn't going to happen, I can help to educate, help to advocate, and help to support these other people. I cannot tell you how alone I felt, feeling like I was going through all of this myself before- just our family. It is so good to know that there are other families out there that have the same struggles. And it's a wonderful feeling when you find a parent whose child has just recently been diagnosed that you can help through.
Autoimmune issues can be really challenging. One thing that I have found is to never expect anything to be any way. We try to expect the unexpected. Em used to get crazy rashes. We figured out they were related to medicine. She's had blood in her stool. When she gets sick it's a challenge. The first part of the challenge is finding out that she is sick, because she doesn't usually know. Her meds hide fevers. (Not very helpful). If she gets sick, it can go bad very quickly if you don't stay vigilant and look for it. A high fever can make her unable to move. Then it's a panic, wondering is she sick or flaring? What to do about meds, injections or immune suppressors especially, when sick? We have so many questions that if we were to call the doctors for every single one.... Well, they'd probably change their number. Who else but the parent of a child (or an affected person) can understand that my child is terribly ill despite maybe being able to run or giggle like a child at that moment? Who else can understand that it's a miracle that my child got out of the chair to wander around at an arcade despite not having been able to walk all day? Not very many. I'm sure we get our share of "WTF?" looks. I don't care. I know that my child doesn't complain, but she does her damndest to try to enjoy her life whenever she can. It's a wonderful thing that I can share these types of things with my communities and they will cheer with me, or tell me what their doc has said to do. I would, once again, be lost without them.
On a side note, I'm a little worried for 2 reasons. The first is that Em has something going on. I'm not sure what yet, but I plan on taking her to the pedi in the next day or two. I'm hoping we can get a Monday appointment, but since it's not urgent I will accept a Tuesday appt. It may be that she has a cold. She's never had a cold before. It's usually sinus infection, bronchittis, flu, etc. She's very stuffed up, but it's clear, so I'm guessing it's a cold. At the same time, I know that Prednisone can mask infections & Prednisone & Remicade both can mask fevers, so I'd rather have her pedi see her. The other thing that bothers me is that, after about 2 weeks of no muscle weakness in her arms, she announced that her arms were weak again. I'm not sure what to make of this, but I'm not going to read too much into it since she's only said it once. It's important to not panic, keeping a level head, evaluating things, and trying to be logical. Difficult at times, but very important.
I think that sleep will come quickly tonight...
It's really sad that it takes having my child become chronically ill to find such a supportive community of such amazing, wonderful people. And yet, it has been such a blessing. I currently have a few of these going at the moment; I have some for the Juvenile Arthritis end, and some for the Juvenile Dermatomyositis side. Not once have a seen a 'snarky' comment, backstabbing, viciousness, or anything other than heartfelt, sincere love and support. I am so blessed by having these people in my life, most of whom I have not met. They are there to offer prayers, sympathy, advice, suggestions, or just listen if you feel the need to rant. These are people from all over the country, all with different levels of income and education. The difference is that we all love our children so much, want to help our children so much, but we know that we can do this best sometimes by reaching out and helping others. There are others who are the child reaching out to help parents understand, & those that have been the child but now understand the adult role and just want to help. Though in some big ways my heart is broken by Emily's diseases, another part of me has been made more whole because of them. If I could take them all on myself, take them away from her, I wouldn't even blink- I would just accept it. However, since that isn't going to happen, I can help to educate, help to advocate, and help to support these other people. I cannot tell you how alone I felt, feeling like I was going through all of this myself before- just our family. It is so good to know that there are other families out there that have the same struggles. And it's a wonderful feeling when you find a parent whose child has just recently been diagnosed that you can help through.
Autoimmune issues can be really challenging. One thing that I have found is to never expect anything to be any way. We try to expect the unexpected. Em used to get crazy rashes. We figured out they were related to medicine. She's had blood in her stool. When she gets sick it's a challenge. The first part of the challenge is finding out that she is sick, because she doesn't usually know. Her meds hide fevers. (Not very helpful). If she gets sick, it can go bad very quickly if you don't stay vigilant and look for it. A high fever can make her unable to move. Then it's a panic, wondering is she sick or flaring? What to do about meds, injections or immune suppressors especially, when sick? We have so many questions that if we were to call the doctors for every single one.... Well, they'd probably change their number. Who else but the parent of a child (or an affected person) can understand that my child is terribly ill despite maybe being able to run or giggle like a child at that moment? Who else can understand that it's a miracle that my child got out of the chair to wander around at an arcade despite not having been able to walk all day? Not very many. I'm sure we get our share of "WTF?" looks. I don't care. I know that my child doesn't complain, but she does her damndest to try to enjoy her life whenever she can. It's a wonderful thing that I can share these types of things with my communities and they will cheer with me, or tell me what their doc has said to do. I would, once again, be lost without them.
On a side note, I'm a little worried for 2 reasons. The first is that Em has something going on. I'm not sure what yet, but I plan on taking her to the pedi in the next day or two. I'm hoping we can get a Monday appointment, but since it's not urgent I will accept a Tuesday appt. It may be that she has a cold. She's never had a cold before. It's usually sinus infection, bronchittis, flu, etc. She's very stuffed up, but it's clear, so I'm guessing it's a cold. At the same time, I know that Prednisone can mask infections & Prednisone & Remicade both can mask fevers, so I'd rather have her pedi see her. The other thing that bothers me is that, after about 2 weeks of no muscle weakness in her arms, she announced that her arms were weak again. I'm not sure what to make of this, but I'm not going to read too much into it since she's only said it once. It's important to not panic, keeping a level head, evaluating things, and trying to be logical. Difficult at times, but very important.
I think that sleep will come quickly tonight...
Thursday, November 25, 2010
Our first blown vein (I think...)
I hope that everyone has had a wonderful Thanksgiving! We have so much to be thankful for. I am so thankful for my amazing family, and how well we get along. I think that is one of our biggest blessings. I'm thankful that we were all together today. I'm thankful that 2 of my children are mostly healthy, and that Emily is able to walk again. I'm thankful for my job, our income, the food on our table and the roof over our heads. Who could ask for anything more? Sure, it would be nice to not be overwhelmed with medical bills, it would be nice to have a bigger house, my picket fence, all of my childhood dreams fulfilled. But really, it's just stuff. Stuff can't make you whole. Only other people that truly love you, and God can fill that. I am blessed. I hope that everyone else was well today, and I hope that all of you reading (and all of my JA & JDM families!) had a day as wonderful as mine.
So, on to the issue at hand... I knew that it wasn't an easy infusion on Tuesday, but I didn't realize how much digging they had to do to find the vein. She was sitting on my lap blocking my view. (I'm only 4'9") I was snuggling into her, and rather focused on the fact that my leg was falling more asleep with every passing second. I was so focused on that & trying to keep her calm that I didn't even notice. This is what happens when the veins hide and roll:
OUCH!!!!! I have never seen anything like that. I happened to notice it today since she had short sleeves on again. I almost dropped the plate! Isa has given me a few tips that we will have to try next time. I cannot even believe that.
Last night we started the new lower Prednisone dosing! Granted, it was only 1ML less, but I'm happy to say that she can once again button her favorite pair of pants! She tried to wear them the other day and couldn't get them buttoned. I know it will be a slow process, but at least this helps a bit.
I'm not sure how I neglected to write this, but I shouldn't have! As I was saying 2 updates ago, we keep planning shopping days for clothes for all of the kids, but generally by the time I get home Emily's too tired to go, or we have other commitments for the evening. Because she's been growing at an alarming rate we just can't keep up. I had bought her a few shirts not long ago, but it was about ten pounds ago. She's been trying to hang on to her old favorites, which she quite simply cannot fit into. She keeps asking me if she can wear size 5 or 6X shirts, but she can fit into 8-12's. Soooooo, her teacher from school bought her a few shirts! I was so touched. Just the idea that she understands the struggles that we are going through right now, and felt compelled to help really warmed my heart. I knew that she was awesome and special to begin with (she was a special needs teacher until this year), but I had no idea what a special soul she is. Yet another thing that stood out to me when I found out they were going to the mission as a class. And another reason that I feel so blessed. I hear stories of children, teens, that get penalized for being sick, for being wheelchair bound. There's no compassion, and many of them are too much for the school to deal with, too hard or complicated. Our school put a system in place with Emily and her Raynaud's last year. To HELP her. Because that's how they are. I cannot think of one teacher or school staff member that I don't like. The principal is so cool, so down to Earth, and yet she has brought the school from the low grade that the former principal helped them earn to a 'B' in her first year there. She obviously loves her job, she knows and loves the kids. She works with the teachers, and they now all work as a cohesive unit. (I hear this from the teachers, but you can SEE the difference, too.) Unfortunately, Emily will have to change schools for middle school, and I'm sure that none can compare to the awesomeness that is her current school, but we'll cross that bridge when we come to it. Hopefully because she is such a good, sweet soul and everyone loves her, hopefully people will continue to bless her. Emily is truly one of those special people that makes other people better. I don't know how or why, but I am in awe of the way that God uses her.
Tuesday, November 23, 2010
Appointment and IV's today
We took a scenic route that was ABSOLUTELY BEAUTIFUL!!! It was such a wonderful drive... until the GPS screwed up and took us quite a ways past the hospital! Had we not gone past it we would have been almost 20 minutes early. However, we ended up being about 10 minutes late. Doh! We got into the Infusion Room right away, and they started working on her almost immediately. Of course, they weighed her first. This child weighed 36 lbs in 2007 before she got Pneumonia. That dropped her down to 29lbs. It took her until her last appointment with the old rheumy to finally hit 42 lbs. That was October 4. Today she weighed 62 lbs!!! All of that water weight from the Prednisone caused her veins to "hide". They had a heck of a time finding a good one. Four people came and looked at her arms. They tried her left first because it's usually the best option. Not today. They eventually moved to her right. There was digging in both arms simply because she's soooooooo swollen from the steroids. She's so uncomfortable.
She calmed down quickly after her meds were started, and the doctor came in fairly quickly as well. I was able to get a prescription for a wheelchair! I got a new permit for the handicap sticker, and copies of her labs and Pulminary testing results. The pulminary was disappointing. They really didn't get a good reading. That's ok. I had fun looking over her labs. When her pedi first ran the very first RF panel she was RF+. Apparently, not anymore. Her RNP, however... (RiboNuclear Protein, if I remember right). That's the marker test for Mixed Connective Tissue Disease. Strong positive is a range of >80+. Her reading? 240. WOW!!! I was very happy that the Lupus & Scleroderma tests were negative. MCTD is still Lupus by association, but at least it doesn't look like it will turn into full-blown Lupus. A Myositis panel was run, but the results weren't posted. However, other labs that show inflammation were whacked out. Her Aldolase was high (high range is >9.7- hers was 15.1). Her ALT was very high... 41 is high normal, hers was 77. RBC was high (not sure what that one is yet). Her ESR has gone down from a high 39 to an average 9. I find this all very interesting.
The best news of all is that we can start to decrease her Prednisone!!! At the same time we will increase her Methotrexate injections. Generally that helps to wean off of the steroids faster. After seeing the doctor (who was very impressed with how great she is doing!) she did well for quite some time, until it was just about time to go. They still had to try to draw blood, and they wanted a urine sample. She was ok with the blood, but she cried & cried about the urine sample. She doesn't get the rage from steroids like some kids do. Instead, she gets upset and teary-eyed. All in all it was a good day considering. Thank God we can start to decrease her steroids. Oh! And I met up with another FaceBook mom!!! I wish I didn't feel so horrible today, but at least we got to chat a little bit. I feel like I'm forgetting something, but I'm so tired I can't keep my eyes open. Happy Thanksgiving if I'm not back on before then! :)
Friday, November 19, 2010
How do we make them understand?
If I told you that my daughter was sick, that she has a disease that causes constant, some days crippling pain, that can cause her to feel as though she has the flu every day of her life, and that could (if she had the systemic type) kill her by causing inflammation to her internal organs, you'd be shocked, right? You'd feel so bad for her, and think "Wow, that's pretty serious stuff". Until I told you that it was called arthritis. That tends to cause a "Oh, thank God it's nothing serious!" type of attitude. Really? How can we make people understand that it's not just because she fell on her knee a bunch of times and it wore out? That it's not just a normal "getting old" disease?
One of the things that helped me keep it together after Emily was diagnosed was a board that I found. It seemed to be filled mostly with seasoned mom's that had been in the arthritis route for some time. One mom, Maggie's mom, was requesting prayers, and said that if they couldn't get her daughter off of the Prednisone soon she would probably die within the year. Maggie's mom, Diane, had a Care Pages page going, and I became a regular visitor. Diane, was so strong, so supportive, and so warm and caring. The love that she had for Maggie showed with every word that she wrote. Because of her mom, Maggie touched many, many lives, changing people for the better. She was a very strong, brave girl, born with Brittle Bone Syndrome. She developed autoimmune arthritis. Autoimmune is when the body's immune system goes crazy and attacks the body. (Sounds like a good time, eh?) Maggie didn't have just regular old arthritis, either. She started with Juvenile Arthritis, but then it developed a type called Behcet's. The Behcet's actually moved to Maggie's brain causing seizures and some brain damage, along with piercing migraines. She was 12- just shy of her 13th birthday when the Behcet's won. Yes, Behcet's is a form of arthritis. Yeah, that's not serious. You can read about Maggie's story here.
Emily's doing better. She has two types of arthritis. She has Rheumatoid, but also Dermatomyositis falls under the umbrella. (That's the muscle loss & inflammation). She's tired after school, but she hasn't missed a day in three weeks! Considering how much time she missed around her hospitalization, that's pretty awesome! One bad thing about her being tired and all of the Prednisone... she's gone from a size 5-6 shirt to a 10-14 in about a month, and when we have time she's too tired to go shopping. We get her new stuff, and she outgrows it in a week. I miss my little, teeny baby that smelled so sweet all of the time. She used to still smell like a baby. The Prednisone has robbed her of that. We can't cuddle with her the same way, and since she's sad about it we're sad about it. However, she is definitely getting better! I'm hoping that she can drop down the dosage of the meds this appointment we have on Tuesday. I know that it won't be enough to help her to lose some of the water weight, but maybe it will help prevent her from gaining much more.
She went on a field trip with school today. They went to a food bank to help out! I'm so happy about it. I wish my son could have gone. I think it's such a wonderful lesson. Her class collected food to take with them, and the rest of the school helped. They took over 900 pounds of food with them! Her class and a fourth grade class went. They sorted food, checked expiration dates, and arranged it on shelving to help people that need a hand. They learned the value of hard work, helping people, how a little kindness can go a long way, and how just by doing simple little things you can make a huge impact on someone's life. How awesome is that????? Her teacher is awesome. We're so blessed to have Emily in her class this year, to have such a good influence and good person in general helping to guide her.
I'm very blessed to have the family that I have. We're certainly not perfect, but I think back to before Emily was diagnosed, how no one was happy. Kevin & Ash couldn't seem to get along, Ash just wasn't happy at all. None of us were. Today, we obviously have our share of problems, but we have probably the happiest household of anyone I know despite it all. We have learned to not sweat the little stuff, there's a bigger picture. Don't take each other for granted; just love. Ash, Kevin & I have little "opera sessions" where we speak to each other in opera. Some days she talks too much, (just like me!) but for the most part, I am so lucky, so blessed to have her as my daughter. At 16 she'd rather hang out with us than go out with her friends. Tonight she & Kevin went to Harry Potter. I'm so happy seeing them get along so well. He's too cute, too :) We're all a little crazy; I guess that's why we get along so well. She made it in to her talent show at school! Unfortunately it's on Tuesday, and Em & I will be at the doctor's all day. I made the appointment before she knew that they were having a talent show, and it's hard to change. I'm hoping that maybe Kevin will be able to go. We shall see. Oh, and on Wednesday Em has another Occupational Therapy evaluation. She had OT years ago when she was first diagnosed. She went for a year and a half, I think before she was discharged. Should be interesting. Well, I should be asleep already. I shall return soon.......
Saturday, November 13, 2010
A lot can happen in a week!
This has been another crazy kind of week! Here's my disclaimer: I'm on an antibiotic that is causing almost a high feeling. I feel like I'm on a pain killer rather than an antibiotic. I got about one whole hour of sleep last night because of it, so forgive me if I make no sense.
The Prednisone has blown Emily up to (what I'm hoping!) is maximum puffing capacity. In short, I don't think that kid can retain any more water or blow up any more than she already has. She looks so pregnant. :( She hates it, but she knows that the meds are helping. In fact tonight she told me "Mom, I can't wait for my next infusions. I really think that I will be able to run again soon, after either the next one or maybe the one after." YAY!!! Ok, so she's not yet ready for marathons, but she's walking, and she made it to school for a whole week! Those 2 points are huge! She also pointed out that her legs aren't as tired now, but her arms and shoulders still get tired. Well, her knee tends to "fall asleep", but compared to the myositis that's a small price to pay. All in all, she's getting better slowly but surely. The rash is still there, however, and when there's active rash there's active disease.
I hadn't been to church in a while. Sundays are my Saturdays, or at least were until recently when they became my Fridays. Sunday is the day that I just can't get out of bed, so we haven't been to church on Sunday for a while. Thursday nights are church for us, but also Brownie night and Emily really enjoys Brownies. This week there was no Brownie meeting so we went to church. I'm so glad we did! Friday I had my yearly thyroid check. I usually don't worry about these as everything has always been good, but when I was looking at my lab prescription I noticed that they had also circled "Hyperlipidemia" as a diagnosis. This had me laughing at the irony; I pour hours and hours each week into medical issues revolving around my daughter, and yet I don't see that I have something going on until a year goes by??? Oy! I went into the office understandably expecting to get "spoken to" about my diet. I love my greens, stay away from fast food and try to stay decently healthy but yes, I am a junk food addict. Give me some chocolate & a Mt. Dew & I'm happy! (Doesn't take much. It's the little things!) Instead, the doctor comes in and says "I need to talk to you about your husband. I've been meaning to call him." Ok, wasn't expecting that. It's a good thing that I went then. Not long ago he had a bone scan of the throat since they had found some cancerous cells on his thyroid when they removed it. He was at their office not too long ago, but the results were inconclusive. He was told to call back, which he did, but they fail at returning phone calls. Then Emily went into the hospital & it got put on the back burner. Anyway, she said that his bone scan showed a "bit of uptake in the throat". I should have asked her to clarify, but I tend to forget to ask important questions when I'm shocked. She strongly recommends that he does radiation. In his case it is just a pill; it's basically the same radioactive iodine pill that they give to people when they undergo the thyroid uptake test. First he has to go off of the one medication that regulates his thyroid hormones, and stay off of it for probably 4-8 weeks. The fun in this includes: being freezing cold when everyone else is fine, horrible back pain, inability to sleep, mood swings, extreme fatigue, total body swelling/ arthritis feeling. Then he takes the pill, stays 3-5 days in the hospital, wait a week, then go for a total body scan to make sure there's no trace. Of course, in this process we will actually NEED to have calls returned to move on to each step, and since they are very, very bad at returning phone calls it will probably take longer than it should. I got a bazillion prescriptions for him, for medicine & testing both. For my efforts I was rewarded with a "you're doing great!", a prescription for my normal thyroid med, a warning that I won't be on the lowest dose forever, and the antibiotic for my toe :) I know I need to suck it up and see a podiatrist, but I really don't have the time, I would rather perform my own surgery when possible, & I didn't want to waste any more money on medical bills. I'm sure I'll still have to go. I suspect I have a mile of toe nail in there that I can't get to no matter how deep I dig, but at least it's not continuously oozing all day long on the antibiotic. :) (It's the little things!) Not to mention, I know I'm getting sick. For once, I hope it's a bacterial infection and not just a cold. Wouldn't that be lovely if I could avoid being sick because of the antibiotic? I worry a bit because I haven't been on this one before, and so far the only antibiotic family that doesn't cause me hives/ rash is the Myacin family.
Last but not least, we were awarded Social Security for Emily! Unfortunately, they decided that she was only eligible for 2 months, so we got it and lost it in the same week. That means that I can't get her on the medical that I need her on. Our amount owed for one IV infusion from the old rheumy is $300. She had 3 of those before she was hospitalized for 6 days and in the hospital she had 2 drugs that I know are extremely expensive. I've been told that the IVIg can be as much as $4,000. I'm running out of time trying to figure out what the heck to do. If this keeps up we will not have one extra cent for anything aside from groceries ever again. Praise the Lord, for I learned how to "Let go, Let God" a long time ago. Simply put, for what I cannot handle, or deal with, or what worries me too much I give to God to deal with. That is one of my secrets to being happy. I try to do what I can, but I have faith that one way or another it will work out. I just have to figure out what needs to be done, and how to do it.
Anyway, I'm rambling. My mind is crazy with this medicine right now. (I haven't been this hyper in a long time!) Keep us in your prayers, please!
The Prednisone has blown Emily up to (what I'm hoping!) is maximum puffing capacity. In short, I don't think that kid can retain any more water or blow up any more than she already has. She looks so pregnant. :( She hates it, but she knows that the meds are helping. In fact tonight she told me "Mom, I can't wait for my next infusions. I really think that I will be able to run again soon, after either the next one or maybe the one after." YAY!!! Ok, so she's not yet ready for marathons, but she's walking, and she made it to school for a whole week! Those 2 points are huge! She also pointed out that her legs aren't as tired now, but her arms and shoulders still get tired. Well, her knee tends to "fall asleep", but compared to the myositis that's a small price to pay. All in all, she's getting better slowly but surely. The rash is still there, however, and when there's active rash there's active disease.
I hadn't been to church in a while. Sundays are my Saturdays, or at least were until recently when they became my Fridays. Sunday is the day that I just can't get out of bed, so we haven't been to church on Sunday for a while. Thursday nights are church for us, but also Brownie night and Emily really enjoys Brownies. This week there was no Brownie meeting so we went to church. I'm so glad we did! Friday I had my yearly thyroid check. I usually don't worry about these as everything has always been good, but when I was looking at my lab prescription I noticed that they had also circled "Hyperlipidemia" as a diagnosis. This had me laughing at the irony; I pour hours and hours each week into medical issues revolving around my daughter, and yet I don't see that I have something going on until a year goes by??? Oy! I went into the office understandably expecting to get "spoken to" about my diet. I love my greens, stay away from fast food and try to stay decently healthy but yes, I am a junk food addict. Give me some chocolate & a Mt. Dew & I'm happy! (Doesn't take much. It's the little things!) Instead, the doctor comes in and says "I need to talk to you about your husband. I've been meaning to call him." Ok, wasn't expecting that. It's a good thing that I went then. Not long ago he had a bone scan of the throat since they had found some cancerous cells on his thyroid when they removed it. He was at their office not too long ago, but the results were inconclusive. He was told to call back, which he did, but they fail at returning phone calls. Then Emily went into the hospital & it got put on the back burner. Anyway, she said that his bone scan showed a "bit of uptake in the throat". I should have asked her to clarify, but I tend to forget to ask important questions when I'm shocked. She strongly recommends that he does radiation. In his case it is just a pill; it's basically the same radioactive iodine pill that they give to people when they undergo the thyroid uptake test. First he has to go off of the one medication that regulates his thyroid hormones, and stay off of it for probably 4-8 weeks. The fun in this includes: being freezing cold when everyone else is fine, horrible back pain, inability to sleep, mood swings, extreme fatigue, total body swelling/ arthritis feeling. Then he takes the pill, stays 3-5 days in the hospital, wait a week, then go for a total body scan to make sure there's no trace. Of course, in this process we will actually NEED to have calls returned to move on to each step, and since they are very, very bad at returning phone calls it will probably take longer than it should. I got a bazillion prescriptions for him, for medicine & testing both. For my efforts I was rewarded with a "you're doing great!", a prescription for my normal thyroid med, a warning that I won't be on the lowest dose forever, and the antibiotic for my toe :) I know I need to suck it up and see a podiatrist, but I really don't have the time, I would rather perform my own surgery when possible, & I didn't want to waste any more money on medical bills. I'm sure I'll still have to go. I suspect I have a mile of toe nail in there that I can't get to no matter how deep I dig, but at least it's not continuously oozing all day long on the antibiotic. :) (It's the little things!) Not to mention, I know I'm getting sick. For once, I hope it's a bacterial infection and not just a cold. Wouldn't that be lovely if I could avoid being sick because of the antibiotic? I worry a bit because I haven't been on this one before, and so far the only antibiotic family that doesn't cause me hives/ rash is the Myacin family.
Last but not least, we were awarded Social Security for Emily! Unfortunately, they decided that she was only eligible for 2 months, so we got it and lost it in the same week. That means that I can't get her on the medical that I need her on. Our amount owed for one IV infusion from the old rheumy is $300. She had 3 of those before she was hospitalized for 6 days and in the hospital she had 2 drugs that I know are extremely expensive. I've been told that the IVIg can be as much as $4,000. I'm running out of time trying to figure out what the heck to do. If this keeps up we will not have one extra cent for anything aside from groceries ever again. Praise the Lord, for I learned how to "Let go, Let God" a long time ago. Simply put, for what I cannot handle, or deal with, or what worries me too much I give to God to deal with. That is one of my secrets to being happy. I try to do what I can, but I have faith that one way or another it will work out. I just have to figure out what needs to be done, and how to do it.
Anyway, I'm rambling. My mind is crazy with this medicine right now. (I haven't been this hyper in a long time!) Keep us in your prayers, please!
Sunday, November 7, 2010
Sometimes, I just don't want to know.
The last few days have been more on the roller coaster. On Wednesday we went back to the hospital fully expecting to have to stay over at least one, maybe even 2 nights. I was so ecstatic when the doctor said that there was no need to keep her over that I promptly forgot most of the questions that I had wanted to ask. I remembered a couple, and happened to answer them while I was asking. For one, the bottoms of her feet have been hurting, primarily her heels. It must be from the weight gain. I have been trying to put some meat on that girl's bones for quite some time now, but I didn't want to do it this way! She has gained so much Prednisone water weight that her little eyes were almost hidden by the puffiness yesterday. It was so bad that Thursday night- after Wednesday's Solu-Medrol IV- she was snorking while trying to sleep. She sounded rattly, but I knew it wasn't an asthma issue. She's really sad and depressed about how she looks right now. Her clothes aren't fitting her properly and she has a hard time walking because of the little belly. She walks like she's pregnant. I keep telling her that it won't be that long. Already they are decreasing her dosage, and though it isn't much of a change yet, it is a change. I called and spoke with a nurse about my concerns. I was worried about the breathing. She has been worried about the breathing. When it scares my brave little wonder girl, it's time to call. They assured me that this is normal, and at least the dosage is being lowered. They don't usually have to keep the kids on that high of a dosage for very long. One thing that I learned from our appointment is more on the Mixed Connective Tissue Disease.
Well, all along I had thought of her arthritis as her primary disease. Nope. The MCTD was only thrown at me in June, I think. It was right before the conference in July. Even then, it was put as "Hmmm, I think maybe she has a little Mixed Connective Tissue going on." Our old rheumy explained that it's an overlap syndrome. (Apparently, not so much.) That made sense at the time, and honestly I didn't research it as well as I should have. I did Google it a bit and came up with almost nothing. Soooo, our new rheumy has been ordering every possible blood test, checking every little thing. You know... how it should be. She told me the other day that she has a positive RNP Antibody, (Ribonucleoprotein) which means that it is Mixed Connective Tissue Disease. Ok. I guess that antibody held the magic key for Google, because after running that I finally found some answers! And I found that I've had it all wrong. The MCTD is the primary. All of these other things- the Raynaud's frost hands, the arthritis, the dermatomyositis (muscle inflammation & loss) is all because of the MCTD. Apparently, a very, very small amount of people have true MCTD; only a very small percentage of the MCTD community gets myositis. Simply put, if these diseases were akin to winning the lottery, she'd be a freakin' billionaire. How lame is that??? With this disease she has a 23% chance of developing Pulminary Hypertension, a 43% chance of developing Pleuritis/pericarditis, and the list goes on. Not to mention that this opens the gateway for other connective tissue diseases to hop on over uninvited. So, that put me in a pretty crappy mood on Friday. Reading all of that on top of watching her blow up and become so uncomfortable and sad... it was a lot to absorb all at once. Then I come home to find out that my video card in my PC had decided to take a crap and color my screen with tiny red squares all over. And Kevin's monitor is going. However, he reminded me that we have another monitor. And, thanks to the kindness of family, I have a new vid card!!! (Thank you so much again, Lita & Ray!) They brought it over today while I was at work! Not only that but when I came home today I found that Emily's face isn't as puffy, her breathing hasn't bothered her today, she's been moving around a decent amount today- feeling better. And then, I checked my email to find new mail from my school. My financial aid went through!!! I'm so excited! That means that I can start taking courses in the spring! I can't wait to get started!
Needless to say, this week has been full of ups and downs. I try hard to always stay positive, to look at the little blessings, but some days that is very hard to do. I think that some days you really need to be down, to let it get to you so that you can clear your head. It doesn't happen often, but I think it's healthy. One of these days I'll have a good breakdown. I know I need one, but I'm so used to being strong that I haven't been able to find the time to accomodate that need. That's ok. It will happen one day. And if not, life goes on. I am pretty sad about the MCTD. That means (I'm pretty sure) that she will likely not be in the 1/3 of people to have the myositis issues once and never again. This is probably going to be something that she will have to struggle with on and off all of her life. However, I haven't been able to find anything to say for sure. Chances are, since this field is so confusing even to the specialists, they probably don't know. And that's something that needs to be changed. These diseases are rare, so they don't get the kind of funding that Diabetes or Cancer get. Not that I have a problem with them having research funds, mind you. I just think it's crazy that this field just gets thrown aside. Why, you ask? "It's only arthritis, no big deal. At least it's nothing serious. Yeah, ok. So many diseases have arthritis as a symptom. This isn't the "oh, I played too hard as a kid and now I have arthritis in my knee" arthritis. This is the "Holy crap, my body is attacking itself and going crazy on me!" arthritis. This is the can't-get- out- of- bed- in- the -morning arthritis, in pain all of the time, deformity causing kind. Thanks to the new biologic medications you don't see nearly as much deformity. These are very, very powerful medications reserved for very sick people. And for many, the arthritis is just the beginning.
Well, all along I had thought of her arthritis as her primary disease. Nope. The MCTD was only thrown at me in June, I think. It was right before the conference in July. Even then, it was put as "Hmmm, I think maybe she has a little Mixed Connective Tissue going on." Our old rheumy explained that it's an overlap syndrome. (Apparently, not so much.) That made sense at the time, and honestly I didn't research it as well as I should have. I did Google it a bit and came up with almost nothing. Soooo, our new rheumy has been ordering every possible blood test, checking every little thing. You know... how it should be. She told me the other day that she has a positive RNP Antibody, (Ribonucleoprotein) which means that it is Mixed Connective Tissue Disease. Ok. I guess that antibody held the magic key for Google, because after running that I finally found some answers! And I found that I've had it all wrong. The MCTD is the primary. All of these other things- the Raynaud's frost hands, the arthritis, the dermatomyositis (muscle inflammation & loss) is all because of the MCTD. Apparently, a very, very small amount of people have true MCTD; only a very small percentage of the MCTD community gets myositis. Simply put, if these diseases were akin to winning the lottery, she'd be a freakin' billionaire. How lame is that??? With this disease she has a 23% chance of developing Pulminary Hypertension, a 43% chance of developing Pleuritis/pericarditis, and the list goes on. Not to mention that this opens the gateway for other connective tissue diseases to hop on over uninvited. So, that put me in a pretty crappy mood on Friday. Reading all of that on top of watching her blow up and become so uncomfortable and sad... it was a lot to absorb all at once. Then I come home to find out that my video card in my PC had decided to take a crap and color my screen with tiny red squares all over. And Kevin's monitor is going. However, he reminded me that we have another monitor. And, thanks to the kindness of family, I have a new vid card!!! (Thank you so much again, Lita & Ray!) They brought it over today while I was at work! Not only that but when I came home today I found that Emily's face isn't as puffy, her breathing hasn't bothered her today, she's been moving around a decent amount today- feeling better. And then, I checked my email to find new mail from my school. My financial aid went through!!! I'm so excited! That means that I can start taking courses in the spring! I can't wait to get started!
Needless to say, this week has been full of ups and downs. I try hard to always stay positive, to look at the little blessings, but some days that is very hard to do. I think that some days you really need to be down, to let it get to you so that you can clear your head. It doesn't happen often, but I think it's healthy. One of these days I'll have a good breakdown. I know I need one, but I'm so used to being strong that I haven't been able to find the time to accomodate that need. That's ok. It will happen one day. And if not, life goes on. I am pretty sad about the MCTD. That means (I'm pretty sure) that she will likely not be in the 1/3 of people to have the myositis issues once and never again. This is probably going to be something that she will have to struggle with on and off all of her life. However, I haven't been able to find anything to say for sure. Chances are, since this field is so confusing even to the specialists, they probably don't know. And that's something that needs to be changed. These diseases are rare, so they don't get the kind of funding that Diabetes or Cancer get. Not that I have a problem with them having research funds, mind you. I just think it's crazy that this field just gets thrown aside. Why, you ask? "It's only arthritis, no big deal. At least it's nothing serious. Yeah, ok. So many diseases have arthritis as a symptom. This isn't the "oh, I played too hard as a kid and now I have arthritis in my knee" arthritis. This is the "Holy crap, my body is attacking itself and going crazy on me!" arthritis. This is the can't-get- out- of- bed- in- the -morning arthritis, in pain all of the time, deformity causing kind. Thanks to the new biologic medications you don't see nearly as much deformity. These are very, very powerful medications reserved for very sick people. And for many, the arthritis is just the beginning.
Wednesday, November 3, 2010
Appointment tomorrow & probable overnight stay
It's been an eventful week! To sum up briefly, Emily went back to school on Halloween because she felt she was ready. We weren't so sure, but we have to trust her judgment so we let her go. She did GREAT! She went out trick-or-treating, took it easier over the weekend, and she's gone to school the last two days. We even had a day where she told me "Mommy, I had NO PAIN TODAY"!!!!! I've never, ever heard that before!!! I was thrilled to hear that. She's really doing very, very well. I can't believe how quickly she has bounced back. That child amazes me every day.
So, tomorrow is her 2 week check-up. I made it for two weeks from hospital discharge. I'm hoping that they'll say "Oh, she's doing great! No need for an overnight stay." However, she does still have active rash, and as long as there is active rash, there will be active disease. I've packed a bag- just in case we have to stay. I'm assuming they'll want to do another Solu-Medrol drip. I'm hoping for another IVIg, but it may be too soon for that. I really can't wait to get her off of the steroids. She's all itchy, bloating badly, and miserable from them. She doesn't like how different she looks right now, and people don't help by mentioning it. She just doesn't want to talk about it. It's heartbreaking for us, too. She just looks unhealthy right now. I know that she needs them to defeat this disease, and that once she's better she can stop them, and then get back to normal. Until then, however, she is stuck with it. I wish there was a different way; as much of a fan as I am of steroids for short spurts of time, I'm not thrilled about long-term use. At all.
Here is my current favorite picture of her. The only bummer is the red eyes. That redness is the active rash of the JDM. Otherwise, she looks beautiful, happy & spunky! :)
So, tomorrow is her 2 week check-up. I made it for two weeks from hospital discharge. I'm hoping that they'll say "Oh, she's doing great! No need for an overnight stay." However, she does still have active rash, and as long as there is active rash, there will be active disease. I've packed a bag- just in case we have to stay. I'm assuming they'll want to do another Solu-Medrol drip. I'm hoping for another IVIg, but it may be too soon for that. I really can't wait to get her off of the steroids. She's all itchy, bloating badly, and miserable from them. She doesn't like how different she looks right now, and people don't help by mentioning it. She just doesn't want to talk about it. It's heartbreaking for us, too. She just looks unhealthy right now. I know that she needs them to defeat this disease, and that once she's better she can stop them, and then get back to normal. Until then, however, she is stuck with it. I wish there was a different way; as much of a fan as I am of steroids for short spurts of time, I'm not thrilled about long-term use. At all.
Here is my current favorite picture of her. The only bummer is the red eyes. That redness is the active rash of the JDM. Otherwise, she looks beautiful, happy & spunky! :)
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