Ever since SOJIA nothing has really gone the way I have planned it. Parents don't plan to have a child suddenly become severely ill and so it kind of catches you off guard. It's like being hit in the chest. Knocks the wind out of you and even after you recover from it you still feel like you can't quite catch your breath. Some days it's harder to breath then others.
We took Emily to a counselor today because there has been an emotional side to this illness. She has an adjustment disorder that is being manifest through anxiety. The doctor was very nice and helped us put this into words to better communicate it with her school, but it still gets me down. I think because I remember that this is for the long run. Once again I am reminded there is no magic pill, the medicine never ends, there is no cure.
Sometimes I feel like screaming to the world; this isn't fair. We did everything right; this shouldn't be happening to our baby so make it stop.
That's putting the breathless feeling into words.
Tuesday, May 29, 2012
Thursday, May 24, 2012
How to manage a SUPER tantrum
'roid rage is a live and well at our home.
Most days Emily is very good at controlling it, but sometimes it is just too much for her. I understand how they make her feel a lot better thanks to Take Me Home from the Oscars; Arthritis, Television and Fashion By: Christine Schwab. In her book Christine talks how the steroids affected her and I can see some of those same things in Emily. Trouble sleeping and anger are the big ones we deal with.
So last night when that angry monster got the better of her I employed some technique that I thought I'd share.
First; I have to recognize where the tantrum is coming from. Part was her not getting her way, part was the steroids. I blame the steroids but she could also just be frustrated with everything that has happened to her lately. I know I am frustrated just watching this disease and all the side effects from the medicine.
Super tantrum stages:
1. Whinny, super whinny with a touch of "I'm about to scream in anger." in her voice.
2. Anger, screaming at the world. Sometimes with words, sometimes just loud screaming.
3. It all comes off. In the hospital she would throw the pillows off her bed, last night she threw her clothes. This is the glorious half-way point.
4. Sad crying, no more screaming just tears and sometimes a; "I want my mommy". This is where mom or dad swoops in to comfort her and tell her it's going to be OK.
So to handle this I put on my patient hat and wait out the first three stages. My husband and I will acknowledge her anger and even empathize with her, but we make sure she knows how she is dealing with it is not acceptable. She does not get what she wants.
At the last stage we swoop in and comfort her and talk about it. Why did she feel so angry? Why did she scream? How can we handle this differently next time?
They have improved since we left the hospital, but any tantrum is not fun in my book.
Most days Emily is very good at controlling it, but sometimes it is just too much for her. I understand how they make her feel a lot better thanks to Take Me Home from the Oscars; Arthritis, Television and Fashion By: Christine Schwab. In her book Christine talks how the steroids affected her and I can see some of those same things in Emily. Trouble sleeping and anger are the big ones we deal with.
So last night when that angry monster got the better of her I employed some technique that I thought I'd share.
First; I have to recognize where the tantrum is coming from. Part was her not getting her way, part was the steroids. I blame the steroids but she could also just be frustrated with everything that has happened to her lately. I know I am frustrated just watching this disease and all the side effects from the medicine.
Super tantrum stages:
1. Whinny, super whinny with a touch of "I'm about to scream in anger." in her voice.
2. Anger, screaming at the world. Sometimes with words, sometimes just loud screaming.
3. It all comes off. In the hospital she would throw the pillows off her bed, last night she threw her clothes. This is the glorious half-way point.
4. Sad crying, no more screaming just tears and sometimes a; "I want my mommy". This is where mom or dad swoops in to comfort her and tell her it's going to be OK.
So to handle this I put on my patient hat and wait out the first three stages. My husband and I will acknowledge her anger and even empathize with her, but we make sure she knows how she is dealing with it is not acceptable. She does not get what she wants.
At the last stage we swoop in and comfort her and talk about it. Why did she feel so angry? Why did she scream? How can we handle this differently next time?
They have improved since we left the hospital, but any tantrum is not fun in my book.
Wednesday, May 23, 2012
Our daily dose of pain
Sometimes the daily injection goes well and sometimes it does not. Last night it did not. Emily tried to grab the needle twice. I have to assume it is the anxiety about the pain that makes her do this because no rational child would try to grab something they know is very sharp and would hurt their hand as much as any other part of their body.
In this video the patient talks about having adult on-set Stills, same thing as SOJIA except in an adult, and he cringes before each Kineret injection. He says it hurts if he touches the injection site and even three hours after it will still hurt him without toughing it.
Emily screamed in anger after the shot last night. It was painfully loud (I'm holding her during this). Then I think about the fact I have to travel for work for two months very soon and my husband will be the one. His wonderful sister is giving a week of her vacation time to come out and help when I first go, and it's only for two months, but I already know what she will be screaming; "I want my mommy!" and that will be so loud it already hurts my heart.
We've talked to the doctor about this and we could eventually try a weekly infusion instead, but that would be time in the hospital once a week. It sure wouldn't hurt as bad so we may go that road, but we have to wait until I get back from my travel and Emily has come down more on the steroid dose. Then there is still a chance she may relapse because the IV medicine could take up to a week to start working. Then there is also the fact that Kineret is supposedly the best there is out there for SOJIA especially. Would we be risking her health only to improve her quality of life slightly?
I'll leave you with something I read last night because it seems to fit (although I am sure Emily would not think this trial very "light" and to me is feels heavy too).
2 Corinthians 4: 17
For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;
Emily screamed in anger after the shot last night. It was painfully loud (I'm holding her during this). Then I think about the fact I have to travel for work for two months very soon and my husband will be the one. His wonderful sister is giving a week of her vacation time to come out and help when I first go, and it's only for two months, but I already know what she will be screaming; "I want my mommy!" and that will be so loud it already hurts my heart.
We've talked to the doctor about this and we could eventually try a weekly infusion instead, but that would be time in the hospital once a week. It sure wouldn't hurt as bad so we may go that road, but we have to wait until I get back from my travel and Emily has come down more on the steroid dose. Then there is still a chance she may relapse because the IV medicine could take up to a week to start working. Then there is also the fact that Kineret is supposedly the best there is out there for SOJIA especially. Would we be risking her health only to improve her quality of life slightly?
I'll leave you with something I read last night because it seems to fit (although I am sure Emily would not think this trial very "light" and to me is feels heavy too).
2 Corinthians 4: 17
For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;
Tuesday, May 22, 2012
Scentsy party
Scentsy Party ID 87232069
One of Emily's wonderful Facebook friends (Emily's Facebook page) is having a virtual Scentsy party for us. I always thought Scentsy products were fun and sweet smelling so if you need something sweet anyways go check out her page.
We'll use the money to help train Pearl.
Happy shopping. (Emily and I love ourselves some good shopping therapy too.)
One of Emily's wonderful Facebook friends (Emily's Facebook page) is having a virtual Scentsy party for us. I always thought Scentsy products were fun and sweet smelling so if you need something sweet anyways go check out her page.
We'll use the money to help train Pearl.
Happy shopping. (Emily and I love ourselves some good shopping therapy too.)
$ The cost of a chronic disease $
I can be honest and say we have good insurance that covers most of our medical costs. The difficulty comes from the fact that unconventional things are what help JIA kids most. We have Emily taking physical Therapy twice a week which she hates and insurance covers and swim therapy once a week which she loves and insurance doesn't cover. We wanted to get a YMCA membership because they have an indoor pool, but since we choose to keep our children at home and out of day care we can't afford it and can't apply for the YMCA scholarship because both parents don't work.
There is another JIA girl who I heard takes dance class six days a week to help keep the stiffness at bay. Movement does help, but of course insurance only care if it's a medical condition. So they will pay for a wheelchair if we want to just give up and let JIA win. Since we don't just want to let JIA win we have sacrificed other things. We were considering buying a second car when Emily started kindergarten, now we won't. We'll be inconvenienced a bit and save the money we would pay on insurance, maintenance and a car payment so we can continue water therapy and buy food for Emily's new friend Pearl.
On top of the unconventional, but successful treatments, we have to pay to park each time we go to physical therapy or the doctor and then most of the appointments are at least two hours if not more which usually cuts into a meal so we either rush home and pop something in the microwave while hungry, irritable children growl or stop to get something to eat and reduce the stress load a bit. That all costs extra money. It's not something you think about.
When Emily was in the hospital they fed her, but not us. Sometimes I would just eat her leftovers because she wasn't eating much. Most days, except on Saturday and Sunday, the Rhonald McDonald house would feed us, but when Emily was in the ICU I would have to leave her to get food. I ran back and forth and lost weight not eating as much. One or two days in the hospital is no big deal, but 57 and the meal bills add up.
We also have the co-pays for her medicines and then we have to pay for the alcohol wipes, syringes, gauze and band aides. Emily doesn't like the feeling of the alcohol wipes so since it's already very traumatic we bought some gauze to dry her off before we give her the injection, but that's expensive and we may stop doing that and have to have her suck it up and deal with the wetness for a few seconds. We hate doing that, but what can you do? We don't go on family vacations, we hardly travel, my husband and I never go on dates any more and unless we're at the doctor appointment during a meal we never eat out. We don't buy new movies or go to the movies, the last time my husband or myself bought new clothes was over a year ago.
JIA has not only taken some of my daughter's mobility it has also taken our money.
There is another JIA girl who I heard takes dance class six days a week to help keep the stiffness at bay. Movement does help, but of course insurance only care if it's a medical condition. So they will pay for a wheelchair if we want to just give up and let JIA win. Since we don't just want to let JIA win we have sacrificed other things. We were considering buying a second car when Emily started kindergarten, now we won't. We'll be inconvenienced a bit and save the money we would pay on insurance, maintenance and a car payment so we can continue water therapy and buy food for Emily's new friend Pearl.
When Emily was in the hospital they fed her, but not us. Sometimes I would just eat her leftovers because she wasn't eating much. Most days, except on Saturday and Sunday, the Rhonald McDonald house would feed us, but when Emily was in the ICU I would have to leave her to get food. I ran back and forth and lost weight not eating as much. One or two days in the hospital is no big deal, but 57 and the meal bills add up.
We also have the co-pays for her medicines and then we have to pay for the alcohol wipes, syringes, gauze and band aides. Emily doesn't like the feeling of the alcohol wipes so since it's already very traumatic we bought some gauze to dry her off before we give her the injection, but that's expensive and we may stop doing that and have to have her suck it up and deal with the wetness for a few seconds. We hate doing that, but what can you do? We don't go on family vacations, we hardly travel, my husband and I never go on dates any more and unless we're at the doctor appointment during a meal we never eat out. We don't buy new movies or go to the movies, the last time my husband or myself bought new clothes was over a year ago.
JIA has not only taken some of my daughter's mobility it has also taken our money.
Thursday, May 17, 2012
Tuesdays and Thursdays
I've decided to post here every Tuesday and Thursday and when I need a little extra writing therapy.
Emily had a mommy day yesterday. I am in the military and in-between deployments so I figured it was a good way to ensure some quality time. She loves to come to work with me so I brought her to work and then we left early to get her blood work done and go to a baseball game with my office.
Blood work was quick, but not painless. Quick is good though, I hate sitting in a room full of what could be sick kids with my immune suppressed daughter waiting for some stranger to inflict more pain on her. Unfortunately because the medicines can have so many adverse side effects and even the disease itself can harm her other organs (we saw it hit her heart and lungs already) every time we go see the Rhuematologist we also have to get labs done.
After labs we headed to the ball park.
I had called ahead of time to be sure they would allow stroller in the park because Emily can walk, but not far. They do, however the nice gentleman I had explained her condition to failed to tell me that we would have to check it into Guest Services which is not close to our seats at all. Then of course we had to walk up and down the stairs to get to the seat. Emily didn't want to stay in the stroller, why would she when we had seats right behind third base, so I encouraged her to walk down the steps. She did a good job and had a good time. The thing I noticed was it is a lot of work to go to a game. She made it up the steps twice, but only with my help and it's not just holding her hand I actually had to reach under her arms and allow her to put most of her weight on me as she stepped up. She only made it two hours too. By the 5th inning she had stopped talking and that's how I know how tired she is. She gets so tired she won't even talk, just sit really still as if she is trying to conserve her energy.
There is a kind-of sort-of mass transit system in San Diego that's a red trolley so being from D.C. and knowing how awesome the metro is I figured we could just ride that home. Emily enjoyed the "train ride", but that was also a ton of work. There are only steps up to the car so I had to ask if we could use the handicap elevator to get into the car and the driver didn't believe me that we needed it. He did end up letting us use it, but I don't think we'll ride it again. I feel for any disabled person that depends on that for transportation.
Last visit we had asked the doctor to sign a form allowing us to get a handicap placard for our car and she told us that we were no different then any other family with two children. It doesn't feel that way and sure I want my daughter to get all better, but she can't walk far or fast so the stroller is our only option right now. I'm so tired of being asked for help and told no. On the one hand I understand the doctor doesn't want us limiting our daughter, but let's be real, this is a long process and she's not going to be running around anytime soon.
So far we've been told she's not sick enough to get a wish, not disabled enough for a dog and we don't need a handicap placard because we're just like other families with two kids. If that's the case then why did the two year old at the ball park beat my five year old as we walked back to our seats? If that's the case why does Emily get so tired that at times she doesn't have the energy to talk? Perhaps I should invite the doctor to go to the next ball game with us and stay a day at our house and then tell us that.
Emily had a mommy day yesterday. I am in the military and in-between deployments so I figured it was a good way to ensure some quality time. She loves to come to work with me so I brought her to work and then we left early to get her blood work done and go to a baseball game with my office.
Blood work was quick, but not painless. Quick is good though, I hate sitting in a room full of what could be sick kids with my immune suppressed daughter waiting for some stranger to inflict more pain on her. Unfortunately because the medicines can have so many adverse side effects and even the disease itself can harm her other organs (we saw it hit her heart and lungs already) every time we go see the Rhuematologist we also have to get labs done.
After labs we headed to the ball park.
I had called ahead of time to be sure they would allow stroller in the park because Emily can walk, but not far. They do, however the nice gentleman I had explained her condition to failed to tell me that we would have to check it into Guest Services which is not close to our seats at all. Then of course we had to walk up and down the stairs to get to the seat. Emily didn't want to stay in the stroller, why would she when we had seats right behind third base, so I encouraged her to walk down the steps. She did a good job and had a good time. The thing I noticed was it is a lot of work to go to a game. She made it up the steps twice, but only with my help and it's not just holding her hand I actually had to reach under her arms and allow her to put most of her weight on me as she stepped up. She only made it two hours too. By the 5th inning she had stopped talking and that's how I know how tired she is. She gets so tired she won't even talk, just sit really still as if she is trying to conserve her energy.
There is a kind-of sort-of mass transit system in San Diego that's a red trolley so being from D.C. and knowing how awesome the metro is I figured we could just ride that home. Emily enjoyed the "train ride", but that was also a ton of work. There are only steps up to the car so I had to ask if we could use the handicap elevator to get into the car and the driver didn't believe me that we needed it. He did end up letting us use it, but I don't think we'll ride it again. I feel for any disabled person that depends on that for transportation.
Last visit we had asked the doctor to sign a form allowing us to get a handicap placard for our car and she told us that we were no different then any other family with two children. It doesn't feel that way and sure I want my daughter to get all better, but she can't walk far or fast so the stroller is our only option right now. I'm so tired of being asked for help and told no. On the one hand I understand the doctor doesn't want us limiting our daughter, but let's be real, this is a long process and she's not going to be running around anytime soon.
So far we've been told she's not sick enough to get a wish, not disabled enough for a dog and we don't need a handicap placard because we're just like other families with two kids. If that's the case then why did the two year old at the ball park beat my five year old as we walked back to our seats? If that's the case why does Emily get so tired that at times she doesn't have the energy to talk? Perhaps I should invite the doctor to go to the next ball game with us and stay a day at our house and then tell us that.
Tuesday, May 15, 2012
Will you...
Awareness has been our biggest hurdle. This not "just arthritis", it's not osteoarthritis that the elderly tend to get. It's an autoimmune disease that is wreaking havoc on 300,000 children in the U.S. alone.
Will you share our story on your facebook page? Will you like Emily's facebook page. Help us tell others that kids get arthritis too.
https://www.facebook.com/ArthritisIntrospective#!/SystemicOnsetJIA
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