Back in 2007 before my children were diagnosed, I was a wreck. I was extremely depressed. Nothing in the world could make me happy. I was crying on my way to work every day. Yeah- every day. Aside from trying to raise my family, I had no idea of what else to do with my life- no clear direction. I was a mess.
After Emily was unofficially diagnosed with Juvenile Arthritis, I was lost... for a while. I felt hopeless. Until I stopped feeling sorry for myself and started thinking of how Emily must feel. After all, she was the one hurting... not me! I started researching, trying to understand this madness. At that time, she could barely walk. Almost every joint was affected. Her anxieties were extremely high. She didn't want anyone to touch her. She couldn't sit on the floor because she couldn't get up. Her kindergarten teacher carried her around school. Getting out of bed was a huge challenge. She spent more time in the bath than anywhere else. And she didn't know what it was like to spend a day out of pain.
Starting Naproxen gave her the first taste of normalacy. Not that it was enough, mind you. It took another 8 months to really feel what it was like to be free. It took 7 months of Methotrexate and then starting Enbrel to help her. Around that time, the Raynaud's started. This and some skin tightening made her rheumy feel that perhaps she had Scleroderma. Oddly enough, this was her good time. This was the closest she has ever come to remission. It lasted about a year.
This was also around the time that I realized that she really isn't mine; she was given to me, entrusted to us as parents. We all belong to God, like it or not. This is when I learned how to let go, and to trust. It was pretty tough. We faced her mortality in a way that no parent should have to. It was also around this time that suddenly, all around me, I was finding blogs of parents whose children had brain tumors. I didn't go out of my way looking for them; they found me. This helped me to see how blessed we were. This was also around the time that the little peeps and I went back to church, the only place I can go to cry. I felt that this was all a way of leading me back home to Him, and bringing the little ones to Him, too. He was showing me how He was taking care of us.
Emily's diseases have helped our family in so many ways. We went from being lost and out of touch with each other to being closer than almost any other families that we know. No, it didn't happen overnight. It took a lot of work and a lot of pain. We count our blessings. We look for the good in everything, because we know that time isn't guaranteed. The longer she is sick, the more medicines get added to her already long list. The longer she is sick, the more systemic effects pop up. The throat issue really scares me. I have heard of people that require surgery to reopen their throats. I hope to God that it doesn't come to that. I refuse to worry about things now until I know for sure that it needs to happen. We go day-by-day, and we have for so long that it is just habit now.
We expect the possibility that one of the kids will be sick daily, or too tired or sore to go out. It isn't because they don't want to go places, because they are usually disappointed when they have to miss out, or we rely on her wheelchair. They have learned to deal with it, and enjoy the good days. We embrace the good days, and just get through the lousy ones. I truly never know how any day will be. She is so complex. He isn't so much, but we need to be careful not to downplay his problems because hers are so much more severe. I try hard not to trample on his feelings. My sweet little man. <3 p="p">
In the midst of this, we have met some of the most amazing families! This has led me to having some of the coolest friends that I could ever imagine. Some I have never actually met in person! My Facebook friends that also have kids with similar problems have become like family. It is so wonderful to have these people in my life... even if I rarely get the chance to chat with anyone right now! (This, too, shall pass.)
I never thought that I would ever go to college, or even know what I wanted to do with my life. Now I have clear direction, and I am empowered by how much I have learned through my research. I would never have researched if first Emily, then Zachary, didn't get sick. I have learned all about Dermatomyositis, which took me months to pronounce, as well as Lupus, Scleroderma, Raynaud's, Psoriasis, Psoriatic Arthritis, Spondylitis, and other little things. I learned what patulous meant, (spreading widely from a center patulous
branches, according to Merriam Webster), and I've learned about esophageal dysmotility and lung changes that warn of pulminary fibrosis. As crappy as this might be, it has given me a confidence that I never before had, as well as a drive and motivation that I did not have before. I made a vow to myself to be able to speak with the doctors on their level. I am 95% there. I am so much stronger than I ever thought that I could be. Ever. And the kids? They are way stronger than I am.
I never, EVER thought that I would be the type to homeschool my children, and yet here I am. Granted, it is out of necessity, but still... There is no way that she could continue on in public school. Just simply no way. She had such a difficult time last year, but that has led to such a great adventure! Now we have our butterfly garden, crabs and fish. We have science everywhere! Everything leads to learning. I love it!!! And we are in this together since I am also in school. We appreciate each other and love each other like we may not have long, because you just never know. I could get hit by a bus tomorrow. What regrets would I have? None. Could you say the same thing? Do you have your priorities straight? Life is too short to worry about competitions and material things when it comes to family. Drama is way over-rated. Who needs it? I don't have time for drama. We are ecstatic that October wasn't spent with a long stay in the hospital for a third year in a row. That rocks!!! Yeah! We are happy just to be here, just to be together. That is what matters, and I am thankful and blessed. Every. Single. Day.
Showing posts with label mixed connective tissue disorder; MCTD. Show all posts
Showing posts with label mixed connective tissue disorder; MCTD. Show all posts
Friday, November 2, 2012
Thursday, June 7, 2012
So much happening!
Oh yes, there is a lot happening. Where to begin?
Monday we went to the Opthamologist for Emily. She had told the doctor at our last visit six months ago that she was having trouble seeing the blackboard. He said that her vision was perfect. Perhaps it was. Right now it's 20/30. We should have her new glasses in the next day or two. She's actually excited about that. LOL! She's so darn cute.
She's been losing a LOT of steroid weight by the looks of it. We don't really notice it, but certain things jump out at you. For instance, her pants were all a little tight on her a month or two ago. I noticed yesterday that she's rolling the top of her pants over now, and she still has to pull them up often. I had to remind her that I made sure to buy only adjustable waist banded pants. :) It's nice to have a visual to show us that it's really changing. She's been looking really good the past couple of weeks. She has some color, she's been dancing around, and tonight she was singing in her room for about an hour. It makes my heart smile.
Both kids are extremely excited to be on summer vacation! In some ways I wish that I had waited until fall to start school myself. I wish that I could be home enjoying them more, rather than spending almost every second working. Every once in a while I take a "CityVille" break. Mindlessly clicking helps to clear up the fuzziness of the mind. I really wish that I had realized that summer courses are half of the time that regular sessions are, with all of the same work. I would have kept my English Composition class, but maybe not have done any math. Math has always been my nemesis, and while I actually rather enjoy many aspects of it now, learning new concepts is just as frustrating as it was years ago. Thankfully, I am more determined now. I need every extra second that I can get to study. I keep telling myself that I am doing this for the kids. I so love them!
The last crazy thing is that our first ever new car (which is old now) toasted- on my first full official day of part-time working status. /Sigh. It's a Toyota. I bought Toyota because they don't break. I love Toyota, and I always have. The darn transmission went. Tranny's never go bad in Toyota! Or at least not often. There went a whole bunch of money that we didn't really have. At least we were able to handle it. Thankfully, we have a Scout friend that has a repair shop and Kevin has helped him in the past. We now owe him BIG TIME!!! He let Kevin bring the car there, and then he even helped Kevin all of Tuesday work on it, and lent him his own car to use until ours is running again. Thank you so much, Ray!!! If we had to take this in to someone it would likely be around $2,000 in work. We are looking at probably about $1000. It sucks that it had to happen but again... the blessings that we receive.... It's amazing sometimes seeing how God works. We are so blessed.
Lastly, we have so JA families that are really struggling badly. I don't have permission to name them but there are two in Florida alone that really need prayers. JA affects so much more than just joints. One girl has vasculitis in her brain- swelling in her brain. Please pray for these families. We have friends in NY struggling, in NM, in CA... So many kids that have it so hard. Please pray fo them.
And it is so past my bedtime. Until next time...
Monday, December 26, 2011
Counterbalance II- The Year in Review
I hope that everyone had a wonderful Christmas, Chanukah, or whatever you celebrate! We have been very blessed this year. My kids had probably one of the best Christmas' ever. We made some great memories with family, had some great meals, we watched a historical documentary of the birth of Christ, and just enjoyed. I hope that you & your family did, also.
For those of you that know us in "real life" or have been following the blog for the past year, you know the crazy roller coaster ride that we have been on. I know that not everyone has the same religious beliefs as me, but I truly believe that we are constantly being tested and consequently rewarded. I feel as though we are living testimony to the miracles of Jesus. Many will argue with me; while I wish that you could believe what I do, I respect your beliefs. I promise not to drone on about my love for Jesus the whole time, but I'll pray for you ;).
Last December our family was very down. It was only last October that Emily was diagnosed with the Dermatomyositis, and December brought one of several months of severe steroid swelling. The child was so swollen that her eyes couldn't open all of the way. She went from 42 pre-steroid pounds (which we rejoiced at because we couldn't get her to gain weight before) to 75lbs in about 2 months. It was shocking. This time last year, Emily was so depressed that she couldn't think of even one thing that would bring her joy. That was when I first started looking into Make A Wish. Being a systemic disease (that can attack her organs), and because so many of her medicines can have very severe side effects, she easily qualified. December also brought us a secret Santa. Despite Kevin being unemployed, we did well enough to be able to afford a decent Christmas for the kids, but then we had this huge blessing appear on our doorstep. Words couldn't express how giddy it made us. It was a bright light during a very dark time.
I think it was February that Make-A-Wish informed us that they could help Emily. This was the start of a slow change in personality for Emily. It's amazing what HOPE can do. It helped her come from deeply depressed to back to a spunky little girl. We set a date for March to meet our wish givers.
March came, and we had to post-pone the meeting with our wish givers because Kevin had to have radiation for his thyroid cancer. We had found out about it the past November (at MY doctor's appointment, without him even with me!), but he chose to put it off a couple of months because it required an iodine-free diet. He wanted to get past the holidays, but then it took months to get his thyroid levels to crash low enough to do the scans. It wasn't very funny then, but he had come home saying "I can't be within 6 feet of anyone, I have to use plastic silverware and plates and put everything aside for a week or it will raise alarms at the dump. Oh, and my half-life expires on May 21". We had originally been told all that we needed was a seperate bathroom.... It was the following week that we met Em's wish givers. They told us that they would work on her Disney wish! March was also when my mom first told me that there was "something" wrong with her, then tried to retract it because she didn't want to seek medical help.
In April we had a nice break with a Cub Scout camping trip. We needed that!!! Later in April we were told that Emily's primary wish would be granted! Oh, how exciting that was!!! I think that, in some ways, this made us worried because nothing ever goes smoothly for us. I don't know why, but there's always a crisis of some sort, so we kind of waited with baited breath. They were working on a vacation date as early as May! We couldn't believe it may be so early.
May brought Emily's Disney trip! Now, you may think, you live in Florida; why go to Disney? When faced with the ups and downs that we have been faced with, when you live too far away for a yearly pass, it just seems out of the question. Make A Wish and Give Kids the World truly made it a magical, amazingly special week that she still talks about as though it were yesterday, especially her meeting with Rapunzel. We were able to spoil the other two kids, and just try to forget all of the appointments, the problems, the finances, and just enjoy family time. And we actually had quite a bit of money left over (we had become very used to being frugal!) That made us decide to take a huge jump that we really shouldn't have, but needed to. Which led us to June & July.
In June we spontaneously put in for a scholarship from the Arthritis Foundation to go to the JA Conference in Washington DC. I wasn't going to apply this year, so I put it in late because I wanted to be considered last. After all, we had an amazing Disney trip; not everyone could say that, & also because we had gone the previous year to the conference, but only Emily & I. I found out the week that we were helping at Cub Scout camp that we won a scholarship! That meant that we could afford to drive up and have all of the family go. I didn't want it to be just Emily & I again. We were very excited! This is how we spent the rest of the MAW money. This month also brought a speeding ticket that I deserved (yes, my bad.) I was totally preoccupied thinking about the dermatologist appointment that we were heading to for Zach. His psoriasis had been beyond-our-control-persistent. The doctor gave him injections which didn't really help, and more creams. I was really starting to feel frustration at this point because it was really taking over him.
In July Em's doctor's suggested adding a new medicine to her IV infusions, and they also asked us to consider getting Emily a port to make her infusions easier. They were getting worse and worse. This brought us to the conference with a whole lot of new question to ask (and a new speeding ticket that I did NOT deserve!). All that I can say about that is there are some officers that should really be ashamed to call themselves law enforcement. The conference brought us some amazing memories. It was so cool to go and meet so many of the people that I've met on Facebook! It really felt like being with family. I'm always the shy one that doesn't know what to do around people, but this was different. We learned some great things about Rituxan that encouraged us to try it, and had the opportunity to speak to Dr. Lisa Rider, who co-wrote "the book" on Juvenile Myositis. She had her first dosage just after we got home & she noted a difference right away. We decided to go ahead with the port. While at the conference we took a jaw class because we knew nothing about jaw issues, only to find out that we would soon need that info. We detoured on the way home and spent two nights camping in the mountains. Secretly, I was hoping our house would have burnt down while we were gone so that we could go back to live in the mountains. I'd be happy living in a tent in Cades Cove. It is heaven. <3 That's where my heart lives.
One morning in August, my son walked up to me and says "Mom, my jaw is clicking & it hurts". I'm pretty sure my heart stopped. With his psoriasis being so, so bad, I had been expecting "Arthur" to rear his ugly head at some point. This led to a frantic mission, how to get him diagnosed. Doctor's often like to think that you're "just being paranoid". Let me tell you, I'm beyond paranoid. I'm in reality, & our reality is that things go wrong. However, as long as we face them head on and quickly, we can deal. It's when things drag out that they become more complicated. So, I had a lot of work to do that would certainly have been much easier to do if I had a medical degree. I really need to work on that. Somehow I almost forgot to point out that it was in August that my mother was diagnosed with colon cancer, which brought emergency surgery & a while host if new problems.
In September we were randomly chosen to have 2 tickets to a concert that I desperately wanted to go to but knew that we couldn't afford. Despite Kevin still not working, I had continued to give in faith to The JOY FM. They do a lot of good for the community, and they have been a huge blessing to me. I never thought we would get free tickets!!! Oh, I was so excited!!! I took Emily with me. She really needed a fun night out in anticipation of the port. September also brought her port placement. UGH!!! It was horrible to deal with her anxiety about it; she was so terrified, but she still wanted to do it. The procedure went fabulously, but we found as we were leaving that day that her IgG counts were down. (Immune system counts). I knew that she would be the one to have a problem, but I hoped & prayed for the best. My son came home from school with a $100 gift card for WalMart from an anonymous source the week of her surgery. <3 We had Family Camp weekend at our beloved Camp Boggy Creek this month, too. It was Rheumatic weekend, so families that weekend were all affected by arthritis in some way. One of my favorite moms happened to look at Zach's fingers and noted that they look swollen. To me, they look like Emily's- Dactyl. It's a sign of arthritis. It felt so validating to have someone else see what I saw. It got my wheels turning, and when I saw one of our rheumatologists from our group at lunch, it occurred to me that she was there as a volunteer and it couldn't hurt to ask her to look at him, right? She couldn't quite tell by the fingers, but she said even if there was no arthritis she could treat the psoriasis. She asked them to schedule him with Emily one day, but we still had to get a referral. So, I got with my pediatricians and requested a bunch of labwork in the meantime. I'm so glad I did because I had no idea that all of the tests I requested were what they wanted us to have before he was seen! So,
In October we finally were really hurting from Kevin's job loss. We had our internet & cell phones off because we just simply couldn't fit them in around other expenses. Some amazing person paid our bills. About $400 worth!!! We made a shout out that we could pay them back in the next week; Kevin had cashed in his 401K to get caught up, and we had only to wait for the check. No one came forward. God bless them!!! We desperately needed some good by then. We also expected to have Zach seen by our rheumy, but instead we spent 2 weeks between two different hospitals for a staph infection in Emily's port. We were in the hospital two & 1/2 hours away on the day of his appointment. I would have had Kevin bring him, but Kevin had just started working again!!! I knew that when the time was right, he would find the perfect job. I knew it because I had prayed that he would lose his previous job and find something that he would love. We waited patiently, faithfully. Things just fell into line, and this job does, indeed, seem perfect. We had a tumultous month, but we got through it. We had some truly amazing friend send things to keep Emily company or keep her busy. One of the nurses gave her the wrong dose of one of her meds and reacted. They thought that she had aseptic meningitis at first. Thankfully, it was just a reaction and lasted only 2 days, but that was the worst two days ever for her. It was terrible!!! She celebrated Halloween in the hospital, having some of those amazing friends send her exactly the costume that she wanted. We also had Mr. G from our elementary school call me while we were still in the hospital to ask if we needed anything done around the house. Oh boy!!! In truth, we had so much that needed to get done that I told him that I couldn't really think of anything. We really had a LOT of things that had been put on the back burner. We also had a friend send us a check because God led him to. We were able to use that to finance Christmas, which would have been pretty bitter otherwise.
In November Mr. G and one of the coaches came over to see how they could help us. I'm really not good at accepting help, but they made me realize that this was something that a whole lot of people wanted to do, and they were all pretty excited about it. I realized that sometimes by accepting help, you help other people. It's a crazy, wonderful, brilliant circle. It was so much more than "just" a little housework. I would go too long re-describing it, but check here if you missed it. When the time came, my street was taken over by vehicles from all of the volunteers that came out to help us. It was overwhelming, and beautiful. It was even more beautiful to find out how many of Emily's friends had come over and helped out! The kids all had fun (so I've been told :) and it's a wonderful way to inspire them to help. My family has all felt like a great weight has been lifted. It was truly amazing to see someone's idea come to reality in such a grande way, though I admit I was at work for most of it! Emily was home, the beginnings of a sinus infection hitting her. She's still fighting it. She's been on antibiotics since October. She won't be off of them until the middle of January. (Sigh) November also brought a solid diagnosis of Psoriatic Arthritis for Zachary. The doctor that we saw that day could feel it in his jaw. He originally said that he'd order an MRI before he felt it; then he said there's no need- it's there. He's been started on Methotrexate and Enbrel. Not something I wanted to be right about, but I've known for years that he would have it. Just knew.
And December... Our van was broken into last week. Can't forget that. It was frustrating, but it's just stuff. Otherwise, aside from the house being sick, and worrying that Emily would be in the hospital for Christmas, with her CT scan showing her sinuses totally blocked, it's been a wonderful month. (Really!!!) We've had zero time for anything. Every day off that I've had, someone has been home sick. BUT, she's home. We received a card from an anonymous source, sent to the school for us. Some wonderful, blessed stranger gave us $60. They were touched by our story in the paper. Our scout pack spoiled us. Knowing what we've been through, knowing how much Kevin helps out, yet knowing that we weren't in need!!!!!!!!, they gave us an amazing care package. Pretty much "shut up and smile". LOL!!! Do you see why the word "Counterbalance" runs through my head? I see miracles. No, not huge ones. But I can see the little ones that people don't notice. I catch little glimpses of how God works through us all. And it's beautiful.
I hope that we have better health around here for 2012, but even if it's just as crazy and stormy as this year, I'm sure that we will have plenty more rainbows and plenty of blessings to balance it all out. Happy New Year to any of you that have made it this far!!! God bless you, and thank you for all of your love, prayers & support. <3
*Edited a few time because I'm a dork and should have written all of these things down! Relying on my memory= not so good!!!
For those of you that know us in "real life" or have been following the blog for the past year, you know the crazy roller coaster ride that we have been on. I know that not everyone has the same religious beliefs as me, but I truly believe that we are constantly being tested and consequently rewarded. I feel as though we are living testimony to the miracles of Jesus. Many will argue with me; while I wish that you could believe what I do, I respect your beliefs. I promise not to drone on about my love for Jesus the whole time, but I'll pray for you ;).
Last December our family was very down. It was only last October that Emily was diagnosed with the Dermatomyositis, and December brought one of several months of severe steroid swelling. The child was so swollen that her eyes couldn't open all of the way. She went from 42 pre-steroid pounds (which we rejoiced at because we couldn't get her to gain weight before) to 75lbs in about 2 months. It was shocking. This time last year, Emily was so depressed that she couldn't think of even one thing that would bring her joy. That was when I first started looking into Make A Wish. Being a systemic disease (that can attack her organs), and because so many of her medicines can have very severe side effects, she easily qualified. December also brought us a secret Santa. Despite Kevin being unemployed, we did well enough to be able to afford a decent Christmas for the kids, but then we had this huge blessing appear on our doorstep. Words couldn't express how giddy it made us. It was a bright light during a very dark time.
I think it was February that Make-A-Wish informed us that they could help Emily. This was the start of a slow change in personality for Emily. It's amazing what HOPE can do. It helped her come from deeply depressed to back to a spunky little girl. We set a date for March to meet our wish givers.
March came, and we had to post-pone the meeting with our wish givers because Kevin had to have radiation for his thyroid cancer. We had found out about it the past November (at MY doctor's appointment, without him even with me!), but he chose to put it off a couple of months because it required an iodine-free diet. He wanted to get past the holidays, but then it took months to get his thyroid levels to crash low enough to do the scans. It wasn't very funny then, but he had come home saying "I can't be within 6 feet of anyone, I have to use plastic silverware and plates and put everything aside for a week or it will raise alarms at the dump. Oh, and my half-life expires on May 21". We had originally been told all that we needed was a seperate bathroom.... It was the following week that we met Em's wish givers. They told us that they would work on her Disney wish! March was also when my mom first told me that there was "something" wrong with her, then tried to retract it because she didn't want to seek medical help.
In April we had a nice break with a Cub Scout camping trip. We needed that!!! Later in April we were told that Emily's primary wish would be granted! Oh, how exciting that was!!! I think that, in some ways, this made us worried because nothing ever goes smoothly for us. I don't know why, but there's always a crisis of some sort, so we kind of waited with baited breath. They were working on a vacation date as early as May! We couldn't believe it may be so early.
May brought Emily's Disney trip! Now, you may think, you live in Florida; why go to Disney? When faced with the ups and downs that we have been faced with, when you live too far away for a yearly pass, it just seems out of the question. Make A Wish and Give Kids the World truly made it a magical, amazingly special week that she still talks about as though it were yesterday, especially her meeting with Rapunzel. We were able to spoil the other two kids, and just try to forget all of the appointments, the problems, the finances, and just enjoy family time. And we actually had quite a bit of money left over (we had become very used to being frugal!) That made us decide to take a huge jump that we really shouldn't have, but needed to. Which led us to June & July.
In June we spontaneously put in for a scholarship from the Arthritis Foundation to go to the JA Conference in Washington DC. I wasn't going to apply this year, so I put it in late because I wanted to be considered last. After all, we had an amazing Disney trip; not everyone could say that, & also because we had gone the previous year to the conference, but only Emily & I. I found out the week that we were helping at Cub Scout camp that we won a scholarship! That meant that we could afford to drive up and have all of the family go. I didn't want it to be just Emily & I again. We were very excited! This is how we spent the rest of the MAW money. This month also brought a speeding ticket that I deserved (yes, my bad.) I was totally preoccupied thinking about the dermatologist appointment that we were heading to for Zach. His psoriasis had been beyond-our-control-persistent. The doctor gave him injections which didn't really help, and more creams. I was really starting to feel frustration at this point because it was really taking over him.
In July Em's doctor's suggested adding a new medicine to her IV infusions, and they also asked us to consider getting Emily a port to make her infusions easier. They were getting worse and worse. This brought us to the conference with a whole lot of new question to ask (and a new speeding ticket that I did NOT deserve!). All that I can say about that is there are some officers that should really be ashamed to call themselves law enforcement. The conference brought us some amazing memories. It was so cool to go and meet so many of the people that I've met on Facebook! It really felt like being with family. I'm always the shy one that doesn't know what to do around people, but this was different. We learned some great things about Rituxan that encouraged us to try it, and had the opportunity to speak to Dr. Lisa Rider, who co-wrote "the book" on Juvenile Myositis. She had her first dosage just after we got home & she noted a difference right away. We decided to go ahead with the port. While at the conference we took a jaw class because we knew nothing about jaw issues, only to find out that we would soon need that info. We detoured on the way home and spent two nights camping in the mountains. Secretly, I was hoping our house would have burnt down while we were gone so that we could go back to live in the mountains. I'd be happy living in a tent in Cades Cove. It is heaven. <3 That's where my heart lives.
One morning in August, my son walked up to me and says "Mom, my jaw is clicking & it hurts". I'm pretty sure my heart stopped. With his psoriasis being so, so bad, I had been expecting "Arthur" to rear his ugly head at some point. This led to a frantic mission, how to get him diagnosed. Doctor's often like to think that you're "just being paranoid". Let me tell you, I'm beyond paranoid. I'm in reality, & our reality is that things go wrong. However, as long as we face them head on and quickly, we can deal. It's when things drag out that they become more complicated. So, I had a lot of work to do that would certainly have been much easier to do if I had a medical degree. I really need to work on that. Somehow I almost forgot to point out that it was in August that my mother was diagnosed with colon cancer, which brought emergency surgery & a while host if new problems.
In September we were randomly chosen to have 2 tickets to a concert that I desperately wanted to go to but knew that we couldn't afford. Despite Kevin still not working, I had continued to give in faith to The JOY FM. They do a lot of good for the community, and they have been a huge blessing to me. I never thought we would get free tickets!!! Oh, I was so excited!!! I took Emily with me. She really needed a fun night out in anticipation of the port. September also brought her port placement. UGH!!! It was horrible to deal with her anxiety about it; she was so terrified, but she still wanted to do it. The procedure went fabulously, but we found as we were leaving that day that her IgG counts were down. (Immune system counts). I knew that she would be the one to have a problem, but I hoped & prayed for the best. My son came home from school with a $100 gift card for WalMart from an anonymous source the week of her surgery. <3 We had Family Camp weekend at our beloved Camp Boggy Creek this month, too. It was Rheumatic weekend, so families that weekend were all affected by arthritis in some way. One of my favorite moms happened to look at Zach's fingers and noted that they look swollen. To me, they look like Emily's- Dactyl. It's a sign of arthritis. It felt so validating to have someone else see what I saw. It got my wheels turning, and when I saw one of our rheumatologists from our group at lunch, it occurred to me that she was there as a volunteer and it couldn't hurt to ask her to look at him, right? She couldn't quite tell by the fingers, but she said even if there was no arthritis she could treat the psoriasis. She asked them to schedule him with Emily one day, but we still had to get a referral. So, I got with my pediatricians and requested a bunch of labwork in the meantime. I'm so glad I did because I had no idea that all of the tests I requested were what they wanted us to have before he was seen! So,
In October we finally were really hurting from Kevin's job loss. We had our internet & cell phones off because we just simply couldn't fit them in around other expenses. Some amazing person paid our bills. About $400 worth!!! We made a shout out that we could pay them back in the next week; Kevin had cashed in his 401K to get caught up, and we had only to wait for the check. No one came forward. God bless them!!! We desperately needed some good by then. We also expected to have Zach seen by our rheumy, but instead we spent 2 weeks between two different hospitals for a staph infection in Emily's port. We were in the hospital two & 1/2 hours away on the day of his appointment. I would have had Kevin bring him, but Kevin had just started working again!!! I knew that when the time was right, he would find the perfect job. I knew it because I had prayed that he would lose his previous job and find something that he would love. We waited patiently, faithfully. Things just fell into line, and this job does, indeed, seem perfect. We had a tumultous month, but we got through it. We had some truly amazing friend send things to keep Emily company or keep her busy. One of the nurses gave her the wrong dose of one of her meds and reacted. They thought that she had aseptic meningitis at first. Thankfully, it was just a reaction and lasted only 2 days, but that was the worst two days ever for her. It was terrible!!! She celebrated Halloween in the hospital, having some of those amazing friends send her exactly the costume that she wanted. We also had Mr. G from our elementary school call me while we were still in the hospital to ask if we needed anything done around the house. Oh boy!!! In truth, we had so much that needed to get done that I told him that I couldn't really think of anything. We really had a LOT of things that had been put on the back burner. We also had a friend send us a check because God led him to. We were able to use that to finance Christmas, which would have been pretty bitter otherwise.
In November Mr. G and one of the coaches came over to see how they could help us. I'm really not good at accepting help, but they made me realize that this was something that a whole lot of people wanted to do, and they were all pretty excited about it. I realized that sometimes by accepting help, you help other people. It's a crazy, wonderful, brilliant circle. It was so much more than "just" a little housework. I would go too long re-describing it, but check here if you missed it. When the time came, my street was taken over by vehicles from all of the volunteers that came out to help us. It was overwhelming, and beautiful. It was even more beautiful to find out how many of Emily's friends had come over and helped out! The kids all had fun (so I've been told :) and it's a wonderful way to inspire them to help. My family has all felt like a great weight has been lifted. It was truly amazing to see someone's idea come to reality in such a grande way, though I admit I was at work for most of it! Emily was home, the beginnings of a sinus infection hitting her. She's still fighting it. She's been on antibiotics since October. She won't be off of them until the middle of January. (Sigh) November also brought a solid diagnosis of Psoriatic Arthritis for Zachary. The doctor that we saw that day could feel it in his jaw. He originally said that he'd order an MRI before he felt it; then he said there's no need- it's there. He's been started on Methotrexate and Enbrel. Not something I wanted to be right about, but I've known for years that he would have it. Just knew.
And December... Our van was broken into last week. Can't forget that. It was frustrating, but it's just stuff. Otherwise, aside from the house being sick, and worrying that Emily would be in the hospital for Christmas, with her CT scan showing her sinuses totally blocked, it's been a wonderful month. (Really!!!) We've had zero time for anything. Every day off that I've had, someone has been home sick. BUT, she's home. We received a card from an anonymous source, sent to the school for us. Some wonderful, blessed stranger gave us $60. They were touched by our story in the paper. Our scout pack spoiled us. Knowing what we've been through, knowing how much Kevin helps out, yet knowing that we weren't in need!!!!!!!!, they gave us an amazing care package. Pretty much "shut up and smile". LOL!!! Do you see why the word "Counterbalance" runs through my head? I see miracles. No, not huge ones. But I can see the little ones that people don't notice. I catch little glimpses of how God works through us all. And it's beautiful.
I hope that we have better health around here for 2012, but even if it's just as crazy and stormy as this year, I'm sure that we will have plenty more rainbows and plenty of blessings to balance it all out. Happy New Year to any of you that have made it this far!!! God bless you, and thank you for all of your love, prayers & support. <3
*Edited a few time because I'm a dork and should have written all of these things down! Relying on my memory= not so good!!!
Wednesday, December 14, 2011
Illness Update
While I told Emily Monday night that there was absolutely no way that I could stay home Tuesday, she was so miserable Tuesday morning that I caved. Yes, I'm very worried about keeping my job, but what can I do? She is so sick. She functions so well, but no doubt she is still very sick. For a girl whose temp is normally about 97F, today she was 101F in the doctor's office- and that's after being on Omnicef since Sunday. According to my bean, it hasn't helped at all.
The weird thing is that she was fine until Saturday. I know I wrote this in my update on Sunday, but she had a 10 day antibiotics course that ended on December 7. I believed that this was her sinus infection coming back because she had her Remicade (immune suppressing infusion) on December 5th. So, it's a good thing that I listened to the doctor and made an appointment for bright and early today.
Our pediatrician believes that she may have multiple infections causing this. She added Clindamycin in addition to the Omnicef, and she ordered a sinus CT. Our health insurance apparently needs a prior authorization before we can have it done (because a doctor's order just isn't good enough these days!), so we had no sooner time slot than Saturday. Hopefully it will be read before Monday. I already had an appointment for Gir made for that day; I just added Emily on to that one. We have been at our pediatrician more in the past three weeks than I can remember at this point.
I'm still working on getting my FMLA leave to go through. Apparently our doctor's didn't fax in Emily's stuff. I haven't been able to get a hold of them to find out if they didn't get my fax, if it was thrown aside and forgotten, or if perhaps it needs to go to some other department. I have no idea. I really need to get that done. Much as I would love to be a stay-home mom, it doesn't really fit in the budget. Oh, how lovely it would be to not have to worry how to get a bazillion appointments done around work, how nice it would be to not have to feel guilty every time I went to work when one of the kids needed to stay home, or to not have to feel guilty for calling into work when they are very sick. Many days it seems that, no matter what I do, by doing the "right" thing for one person, I'm ticking off somebody else. Thank God our school understands with Emily. I so love them. <3
It's a little more delicate with Zach right now. For one thing, anyone that doesn't know him likely worries that he is contagious when they see him. He is truly a mess. There is nothing that we can do except wait for the Enbrel and hope for the best. Well, that's not 100% true. I could slather him with Aquaphor all over, but he really, really hates that. It's greasy, he sticks to everything and he's uncomfortable. That's been the only thing that we find that works, and he begs us to not do it. We figure, if he hates it enough that he would rather walk around feeling miserable, it must be pretty bad. We have found a few things that help for his head. Clobex works the best, but it's a prescription and our insurance doesn't cover it. We would have to fail everything else first, then pay $325 per bottle for it. No thanks. Or there's Paul Mitchell Tea Tree Special Shampoo. It doesn't really stop the progression of the disease, but it does help remove some of the scales. We use a nail brush, like a mechanic would use on their hands to get the grease off.
Well, anyway, back to the school issues. I don't have an IEP or 504 Plan for him yet, so we have to be careful of his time missed. That would be easier if I could remember to get notes from the doctor's for him. Today we have to take him back for his TB test results, and then we will hopefully be able to start his Enbrel. I am currently going through an insurance nightmare with this, but I hope to get everything settled soon. (Good thing I've been stuck home the past few days!) I cannot wait to get his Enbrel started!!!
Let me also say that, before Zachary developed psoriasis, I had no idea how bad it was. I didn't understand it at all. Psoriasis is also an autoimmune disease. (Again, autoimmune is where the body attacks itself.) Psoriasis is it's own disease, but it can turn into Psoriatic Arthritis, which is what has happened to my son. Psoriasis itself can really take over. He went from having just a small patch on his ear to having his ear covered pretty quickly. Now, years later, we marvel at how it has taken over. It's popping up on his joints now, too. I notice little ones trying to start all over his jaw. It's in the folds of the knees and elbows, and the bony parts, too. It is in his eyebrows, but it has also formed in the past on his eyelids. He has one trying to start in the lower fold of the eye. It itches, it burns, it doesn't feel good, and people stare. It lowers one's self esteem. My poor little man has been so embarrassed because of it. Hopefully once we start the Enbrel, we will regain control of his skin issues and also head off anymore joint involvement. I see where it's going and it scares me. I also know that having finger involvement means that he'll likely be polyarticular (5 or more joints involved). I'm really praying that the Enbrel is as much of a miracle for him as it was for Emily. Yeah, what we go through is pretty crazy, but by the grace of God we get through. As long as we have Jesus on our side, we will continue to get through with a positive attitude, knowing that He is there to lean on when we grow weary and we will be cared for. That's enough for me.
The weird thing is that she was fine until Saturday. I know I wrote this in my update on Sunday, but she had a 10 day antibiotics course that ended on December 7. I believed that this was her sinus infection coming back because she had her Remicade (immune suppressing infusion) on December 5th. So, it's a good thing that I listened to the doctor and made an appointment for bright and early today.
Our pediatrician believes that she may have multiple infections causing this. She added Clindamycin in addition to the Omnicef, and she ordered a sinus CT. Our health insurance apparently needs a prior authorization before we can have it done (because a doctor's order just isn't good enough these days!), so we had no sooner time slot than Saturday. Hopefully it will be read before Monday. I already had an appointment for Gir made for that day; I just added Emily on to that one. We have been at our pediatrician more in the past three weeks than I can remember at this point.
I'm still working on getting my FMLA leave to go through. Apparently our doctor's didn't fax in Emily's stuff. I haven't been able to get a hold of them to find out if they didn't get my fax, if it was thrown aside and forgotten, or if perhaps it needs to go to some other department. I have no idea. I really need to get that done. Much as I would love to be a stay-home mom, it doesn't really fit in the budget. Oh, how lovely it would be to not have to worry how to get a bazillion appointments done around work, how nice it would be to not have to feel guilty every time I went to work when one of the kids needed to stay home, or to not have to feel guilty for calling into work when they are very sick. Many days it seems that, no matter what I do, by doing the "right" thing for one person, I'm ticking off somebody else. Thank God our school understands with Emily. I so love them. <3
It's a little more delicate with Zach right now. For one thing, anyone that doesn't know him likely worries that he is contagious when they see him. He is truly a mess. There is nothing that we can do except wait for the Enbrel and hope for the best. Well, that's not 100% true. I could slather him with Aquaphor all over, but he really, really hates that. It's greasy, he sticks to everything and he's uncomfortable. That's been the only thing that we find that works, and he begs us to not do it. We figure, if he hates it enough that he would rather walk around feeling miserable, it must be pretty bad. We have found a few things that help for his head. Clobex works the best, but it's a prescription and our insurance doesn't cover it. We would have to fail everything else first, then pay $325 per bottle for it. No thanks. Or there's Paul Mitchell Tea Tree Special Shampoo. It doesn't really stop the progression of the disease, but it does help remove some of the scales. We use a nail brush, like a mechanic would use on their hands to get the grease off.
Well, anyway, back to the school issues. I don't have an IEP or 504 Plan for him yet, so we have to be careful of his time missed. That would be easier if I could remember to get notes from the doctor's for him. Today we have to take him back for his TB test results, and then we will hopefully be able to start his Enbrel. I am currently going through an insurance nightmare with this, but I hope to get everything settled soon. (Good thing I've been stuck home the past few days!) I cannot wait to get his Enbrel started!!!
Let me also say that, before Zachary developed psoriasis, I had no idea how bad it was. I didn't understand it at all. Psoriasis is also an autoimmune disease. (Again, autoimmune is where the body attacks itself.) Psoriasis is it's own disease, but it can turn into Psoriatic Arthritis, which is what has happened to my son. Psoriasis itself can really take over. He went from having just a small patch on his ear to having his ear covered pretty quickly. Now, years later, we marvel at how it has taken over. It's popping up on his joints now, too. I notice little ones trying to start all over his jaw. It's in the folds of the knees and elbows, and the bony parts, too. It is in his eyebrows, but it has also formed in the past on his eyelids. He has one trying to start in the lower fold of the eye. It itches, it burns, it doesn't feel good, and people stare. It lowers one's self esteem. My poor little man has been so embarrassed because of it. Hopefully once we start the Enbrel, we will regain control of his skin issues and also head off anymore joint involvement. I see where it's going and it scares me. I also know that having finger involvement means that he'll likely be polyarticular (5 or more joints involved). I'm really praying that the Enbrel is as much of a miracle for him as it was for Emily. Yeah, what we go through is pretty crazy, but by the grace of God we get through. As long as we have Jesus on our side, we will continue to get through with a positive attitude, knowing that He is there to lean on when we grow weary and we will be cared for. That's enough for me.
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