So chronic illness is just that. Chronic. It doesn't go away and becomes a part of everyone it touches. My daughter hasn't been well in years. YEARS. I never thought about any of our kids getting sick and not getting better. Watching disease take over your child's life is a soul sucking experience. There is no way I can be who I was before all this. Sometimes, I walk around with thoughts of how so few things truly matter in anyone's life. I would give up everything I own, my own life, if my daughter could be healthy. That brings me back to the fact that God doesn't play "Let's make a deal". I wish, but then God wouldn't be God.
Two weeks ago she had two good days in a row. Sunday and Monday. Fatigue and pain didn't take over and prevent her from wearing sparkly eyeshadow and going on an outing with her friend. Hallelujah! Those two days were gold star worthy and I'm holding out hope that more of those days will come soon. It's getting harder to hope like that.
Right now, there are stomach troubles which may or may not be caused by an ulcer. It wouldn't surprise me considering the ridiculous cocktail of stomach irritating drugs she has to take on a daily basis. In two weeks she'll see another specialist that may or may not know what they're doing (because that happens a LOT) with someone like her. Who probably has never seen or heard of a kid having so many problems, especially not her problems. Ulcers are common, right? If it is an ulcer. More likely, she probably has some other rare problem going on that will take no less than four doctors and ten months to figure out. That's what I expect because that's how we roll. Too much of her life has been spent in pain while medical science fails her. It's happening at this very moment.
I'm done for now. Autoimmune disease sucks. I'm hormonal and exhausted from watching my girl suffer more than usual the last few nights. The doctor finally decided to refill her pain medication so she is sleeping and I'm going to sleep and read my Bible in the morning and ask God to help us out here. This is the way it is right now.
Wednesday, June 9, 2010
Sunday, November 22, 2009
Maybe medication
We're still not on the right track to helping her feel better. The last month has been one of constant pain and fatigue for her. She had her first infusion of Solumedrol by IV with the hopes of ending this continuous flare. That didn't work. She's been on 40 mg. of Prednisone(along with everything else) for a while now and nothing is getting better for her. Then last week her doctor called and suggested that we have a consult to talk about new medication options. He talked to me on the phone a couple of weeks ago about the next level of medication that he thought we needed to try but because of the risky nature of the side effects he asked me to come in so that we could talk face to face.
Her tiredness had increased quite a bit after the Solumedrol infusion. According to the fact sheet they gave me, it should have ramped her up a little bit if anything. Because they drew blood to test it during the IV procedure, I asked about the results when I arrived for the consult thinking that perhaps she was a little anemic. The doctor didn't order the blood test and didn't know it had been done, so he hadn't checked for results. Something was off in her test. Something called Sed rate. Apparently that Sed rate is an indicator of inflammation in your body. Normal for her would be between 0 and 20. Her Sed.rate is 140. The doctor said that she would have to feel horrible with that kind of inflammation in her body. He had suspected that she has vasculitis somewhere, and this confirmed it for him. So we went from thinking she was really sick to knowing she's really sick. It took away any doubts that she needed to be on a new medicine. One that has some scary side effects that I prefer not to think about, but they are there. Her doctor said that in his whole rheumatology practice that he might have ten kids that are sick enough for him to put on Imuran and she's one of them. Having the test results that leave no doubt that she needs this new medication gave me a little peace about it. It's another example of God's hand guiding us through all this.
My prayer is that this medicine works, and that she might be able to stay on a low enough dose to reap the benefits without the risks. I love this girl. She needs a life of happiness, the Jonas Brothers and frosty eyeshadow. If this is a means to that end then we will be beyond blessed.
Her tiredness had increased quite a bit after the Solumedrol infusion. According to the fact sheet they gave me, it should have ramped her up a little bit if anything. Because they drew blood to test it during the IV procedure, I asked about the results when I arrived for the consult thinking that perhaps she was a little anemic. The doctor didn't order the blood test and didn't know it had been done, so he hadn't checked for results. Something was off in her test. Something called Sed rate. Apparently that Sed rate is an indicator of inflammation in your body. Normal for her would be between 0 and 20. Her Sed.rate is 140. The doctor said that she would have to feel horrible with that kind of inflammation in her body. He had suspected that she has vasculitis somewhere, and this confirmed it for him. So we went from thinking she was really sick to knowing she's really sick. It took away any doubts that she needed to be on a new medicine. One that has some scary side effects that I prefer not to think about, but they are there. Her doctor said that in his whole rheumatology practice that he might have ten kids that are sick enough for him to put on Imuran and she's one of them. Having the test results that leave no doubt that she needs this new medication gave me a little peace about it. It's another example of God's hand guiding us through all this.
My prayer is that this medicine works, and that she might be able to stay on a low enough dose to reap the benefits without the risks. I love this girl. She needs a life of happiness, the Jonas Brothers and frosty eyeshadow. If this is a means to that end then we will be beyond blessed.
Friday, October 30, 2009
Alrighty then
The doctor FINALLY called, apologizing for his terrible phone system. He raised her Prednisone to 40 mg., which is the highest dose she's been on since her Sjogren's diagnosis a year ago. He said that there was a dramatic difference in the body's response when you go from 30 to 40 and thought she should see some improvement in a couple of days. Why then, did he not try this dosage a long time ago? He has admitted that because she is dealing with issues that he doesn't regularly treat that he may not be as aggressive as a rheumatologist that sees adults would be. She'll be seventeen in less than a year and that's the magic number when an adult rheumatologist will see her. Other than his phone system, I have no complaints about her doctor. Pediatric Rheumatologists are in very short supply (would you believe there are 10 states WITHOUT one) so I understand why it's hard to get in touch with him sometimes. Most likely, I'll be scheduling her to see another doctor the day after her seventeenth birthday. We need aggressive.
I finally found the saline gel that the ENT recommended for her nose. Not sure it's helping, but that along with saline spray and a vaporizer in her room will hopefully keep her more comfortable. Her lips have been less chapped since we started keeping her room "moister" and reducing the use of our air conditioning system. The nosebleeds continue but are less frequent. I almost feel like she should live somewhere that was steamy like a green house. We see 100 percent humidity often so I shouldn't complain.
Tonight she's going to a sleepover with her Sunday school class. A little more fun in her life would be a good thing.
I finally found the saline gel that the ENT recommended for her nose. Not sure it's helping, but that along with saline spray and a vaporizer in her room will hopefully keep her more comfortable. Her lips have been less chapped since we started keeping her room "moister" and reducing the use of our air conditioning system. The nosebleeds continue but are less frequent. I almost feel like she should live somewhere that was steamy like a green house. We see 100 percent humidity often so I shouldn't complain.
Tonight she's going to a sleepover with her Sunday school class. A little more fun in her life would be a good thing.
Tuesday, October 27, 2009
Camp Boggy Creek
Haley's rheumatologist handed us an application for us to go to a family weekend at Camp Boggy Creek on her last appointment. I filled it out not knowing just what to expect. When she was accepted to go for the weekend, I was excited but a little apprehensive as well. Camp Boggy Creek provides fun time away for kids/families dealing with some type of chronic illness. It's funded by Paul Newman Charities and other private donors. The weekend we were there for was the Juvenile Rheumatoid Arthritis and other rheumatoid conditions weekend.
For the last month Haley has been feeling pretty bad. Her relapsing polychondritis is flaring again and she's been dealing with a lot of pain. She has a new foot injury that is adding more pain to the mix. Not good. Last week, just before we went, her doctor made some adjustments to her medication that has given her some relief. He wanted her to feel better for Boggy Creek. He warned me that most people that would be there wouldn't know anything about what Haley has yet alone have any of her issues. He said that there would be kids there that had dealt with the horrible side effects from her meds though, and that she would still have fun. He kind of gave me a nice little pep talk.
We arrived on Friday evening and Haley's pals Colin and Dahlia were outside the cabin waiting for her. Dahlia was a psychiatry resident who would have a lot of jobs to do during camp, but would hang out with Haley when she could. Colin was a college senior from Kentucky who's fraternity flew him (and other members) in to volunteer for the weekend. Colin would be with her/us for the whole weekend just to make sure that Haley was comfortable and had whatever would make her happy. Whatever Haley wanted to do, Colin did. I don't know his parents, but they should be so proud of the caring young man they've raised.
From the time we got there, every minute was about the kids and families having fun. There was so much downright silliness that you couldn't help but laugh. A lot. Friday night was dinner, ice breaker activities and a camp fire. Saturday was full of activities, including time when Colin took the kids to do whatever they did while John and I went to a time for just the parents. This was the only time when there was talk of conditions, medications and the hardships of having a sick child. They separated the men from the women for this time. We thought that the boys would talk for about ten minutes then watch football. John said they talked the whole time. Not sure what went on there. As for my time with the women, it was really good. We cried for each other's children and for our own. There was something very special about that time and I was really blessed by it. These were all moms of kids that lived with pain too much of the time. There's a part of you that can't be okay when they are hurting and those women were right there with me. I didn't count on having that kind of experience and it was really a blessing.
After dinner Saturday night Haley was really in pain and wanted to put her pajamas on at 7:30. I had given her everything I could for pain at that point and knew that she needed to go home and to her bed. She was positively drained and had that look on her face that a mom just knows isn't good. We had to leave camp early. I was crying as they hugged me and told me that they understood. They drove me to pick up my car and I was still crying. I want my girl to be well and she isn't. It was so disappointing that we needed to go. Then I started to look through the photos that we took from just that day. She did more fun stuff in one day than we've done in a long time. She did have the best day, she laughed lots and really enjoyed herself. God really gave me peace in that moment. Maybe we can't do so much at once, but we need to do more to enjoy life, even if it's at a little slower pace. That's the biggest lesson I learned this weekend.
For the last month Haley has been feeling pretty bad. Her relapsing polychondritis is flaring again and she's been dealing with a lot of pain. She has a new foot injury that is adding more pain to the mix. Not good. Last week, just before we went, her doctor made some adjustments to her medication that has given her some relief. He wanted her to feel better for Boggy Creek. He warned me that most people that would be there wouldn't know anything about what Haley has yet alone have any of her issues. He said that there would be kids there that had dealt with the horrible side effects from her meds though, and that she would still have fun. He kind of gave me a nice little pep talk.
We arrived on Friday evening and Haley's pals Colin and Dahlia were outside the cabin waiting for her. Dahlia was a psychiatry resident who would have a lot of jobs to do during camp, but would hang out with Haley when she could. Colin was a college senior from Kentucky who's fraternity flew him (and other members) in to volunteer for the weekend. Colin would be with her/us for the whole weekend just to make sure that Haley was comfortable and had whatever would make her happy. Whatever Haley wanted to do, Colin did. I don't know his parents, but they should be so proud of the caring young man they've raised.
From the time we got there, every minute was about the kids and families having fun. There was so much downright silliness that you couldn't help but laugh. A lot. Friday night was dinner, ice breaker activities and a camp fire. Saturday was full of activities, including time when Colin took the kids to do whatever they did while John and I went to a time for just the parents. This was the only time when there was talk of conditions, medications and the hardships of having a sick child. They separated the men from the women for this time. We thought that the boys would talk for about ten minutes then watch football. John said they talked the whole time. Not sure what went on there. As for my time with the women, it was really good. We cried for each other's children and for our own. There was something very special about that time and I was really blessed by it. These were all moms of kids that lived with pain too much of the time. There's a part of you that can't be okay when they are hurting and those women were right there with me. I didn't count on having that kind of experience and it was really a blessing.
After dinner Saturday night Haley was really in pain and wanted to put her pajamas on at 7:30. I had given her everything I could for pain at that point and knew that she needed to go home and to her bed. She was positively drained and had that look on her face that a mom just knows isn't good. We had to leave camp early. I was crying as they hugged me and told me that they understood. They drove me to pick up my car and I was still crying. I want my girl to be well and she isn't. It was so disappointing that we needed to go. Then I started to look through the photos that we took from just that day. She did more fun stuff in one day than we've done in a long time. She did have the best day, she laughed lots and really enjoyed herself. God really gave me peace in that moment. Maybe we can't do so much at once, but we need to do more to enjoy life, even if it's at a little slower pace. That's the biggest lesson I learned this weekend.
Wednesday, October 14, 2009
Learning
The last month or so has been a huge struggle. There are no words that can explain what it's like watching your child suffer in pain. You do not get used to it and it doesn't get any easier, that's for sure. The fact of the matter would be that it gets HARDER every day that she is in pain. I wish it was me that was dealing with all this, but God doesn't play "Let's make a deal". He won't let us trade places, even though my sweet girl said that I wouldn't want to even if I could.
Even in these difficult days there have been blessings. One would be that Haley has been invited to Camp Boggy Creek for us to go for a family weekend with other kids nad families dealing with rheumatic disorders. Her doctor said not to expect to see any other kids there with her diagnoses, but that they would have other things in common like pain and having to take the same medication. That sounds pretty bad, but it would be nice for her to meet someone that she could identify in that way. I also hope that she has other things in common with people she meets there. Things like Twilight, Harry Potter, Miley Cyrus and sparkly eyeshadow. We'll see how it goes.
Just yesterday, her doctor called me to increase her Prednisone and double up on her pain medication in order to get the polychondritis under control and to ease her pain. We seriously hate the Prednisone part, but reducing that pain sounds great. Her stomach has been doing much better, hopefully that will be okay still with the increase in her steroids. Next week she sees another specialist for her ears. The ringing has gotten worse and they need to check the structure to make sure that her ears aren't being affected by the polychondrits.
Goodness, it seems that there's a whole lot going on in her body. I still know that she was wonderfully made and that her Creator designed a perfect her. Knowing that doesn't make me able to accept her pain. Having faith that God is in control doesn't mean that I can sit around and just wait for things to happen. It means seeking Him and asking for doors to be opened for the best care possible. My prayer is that she lives a big full life that doesn't include pain. That's all I want.
Even in these difficult days there have been blessings. One would be that Haley has been invited to Camp Boggy Creek for us to go for a family weekend with other kids nad families dealing with rheumatic disorders. Her doctor said not to expect to see any other kids there with her diagnoses, but that they would have other things in common like pain and having to take the same medication. That sounds pretty bad, but it would be nice for her to meet someone that she could identify in that way. I also hope that she has other things in common with people she meets there. Things like Twilight, Harry Potter, Miley Cyrus and sparkly eyeshadow. We'll see how it goes.
Just yesterday, her doctor called me to increase her Prednisone and double up on her pain medication in order to get the polychondritis under control and to ease her pain. We seriously hate the Prednisone part, but reducing that pain sounds great. Her stomach has been doing much better, hopefully that will be okay still with the increase in her steroids. Next week she sees another specialist for her ears. The ringing has gotten worse and they need to check the structure to make sure that her ears aren't being affected by the polychondrits.
Goodness, it seems that there's a whole lot going on in her body. I still know that she was wonderfully made and that her Creator designed a perfect her. Knowing that doesn't make me able to accept her pain. Having faith that God is in control doesn't mean that I can sit around and just wait for things to happen. It means seeking Him and asking for doors to be opened for the best care possible. My prayer is that she lives a big full life that doesn't include pain. That's all I want.
Sunday, September 20, 2009
Summer
Good grief, I haven't written in a long time. To be honest, the summer came and went with not much fun or excitement. I had big plans of fun outings to take my kids on but nothing much came of them. Guess having a kid that doesn't feel great can do that if you aren't careful. I wasn't careful that way this summer. Not one trip to the beach, not one fun family getaway. We did make it to see the specialist in Atlanta. That was a blessing in itself, but not fun.
The doctor in Atlanta suggested that we get her dosage of Prednisone down and that would help her cope with the pain as well as reduce her risk of harmful side effects. We were able to get her from 15 mg. per day to 8 mg. per day before things started to get bad again. The doctor thought that reducing that drug would also tell us whether she does indeed have the Relapsing Polychondritis or not. Unfortunately, as of this week, she's back on the high dosage of Prednisone and that diagnosis has been confirmed. Her nose is inflamed again, her joints are achy, she has a headache. Her stomach is bothering her from all the meds. She isn't sleeping. I hate this.
Probably for reasons of a hormonal nature, I've not coped with this news well. Not at all. My faith is still strong, but I'm not being comforted right now. Maybe because I'm not in a place to be comforted. My child is hurting and I'm just sad. That's okay for now but I can't stay here long. I know His strength is made perfect in my weakness. I know He's here and cares for us. I know it all but am just in a bit of a low spot. Sometimes the sadness of it all is just overwhelming. It doesn't happen often but when it does...
Good thing it's still hot here. We need to go to the beach.
The doctor in Atlanta suggested that we get her dosage of Prednisone down and that would help her cope with the pain as well as reduce her risk of harmful side effects. We were able to get her from 15 mg. per day to 8 mg. per day before things started to get bad again. The doctor thought that reducing that drug would also tell us whether she does indeed have the Relapsing Polychondritis or not. Unfortunately, as of this week, she's back on the high dosage of Prednisone and that diagnosis has been confirmed. Her nose is inflamed again, her joints are achy, she has a headache. Her stomach is bothering her from all the meds. She isn't sleeping. I hate this.
Probably for reasons of a hormonal nature, I've not coped with this news well. Not at all. My faith is still strong, but I'm not being comforted right now. Maybe because I'm not in a place to be comforted. My child is hurting and I'm just sad. That's okay for now but I can't stay here long. I know His strength is made perfect in my weakness. I know He's here and cares for us. I know it all but am just in a bit of a low spot. Sometimes the sadness of it all is just overwhelming. It doesn't happen often but when it does...
Good thing it's still hot here. We need to go to the beach.
Friday, June 12, 2009
Just this much.
So it's been a while since I've posted. Things have been difficult, and while writing usually helps me keep things in perspective, it's something I haven't been able to do. During the last six weeks Haley's pain has continued to escalate. She is limited in what pain medication she can take because of stuff she already has to take. We try to comfort her, keeping her calm and semi-distracted because that's all we can do. It's not all we can do, because we pray constantly. That's a lot because I know God still hears our prayers, but it feels like we should be doing much more when prayer for our Mighty God's healing is the most we can do.
Just over a week ago, a wonderful specialist in Atlanta has agreed to see Haley. We beat our heads against walls trying to find a doctor that would see her for the polychondritis and were rejected every time until this doctor. We are praying for him to be healthy, and for him to have wisdom when he sees Haley on July 28th. It was so miraculous for him to see her next month. We waited the entire summer last year for an appointment for her to see a pediatric rheumatologist. This would feel like nothing in comparison if it wasn't for her nose.
Her nose is where this whole polychondritis stuff started. For months, like since at least December, she would frequently complain of pain in her nose. I thought she had a pimples in it or maybe it was a side effect from something she was taking. It did look reddish at times but didn't seem like a big deal at all. When I finally remembered to mention it to her doctor, I quickly knew it was a big deal and that he should have known about it sooner. Last month, he did try to treat the inflammation by tripling her dose of prednisone for two weeks, but that didn't help and the side effects were horrible for her. He then decided that this was more than he could handle and gave us more names to contact. Now, after much (and I mean MUCH) prayer and waiting, she has an appointment with a big time rheumatologist that I believe will figure her out. But right now her nose is still what we refer to as "angry". Reddish, swollen and inflamed. The shape of her nose is changing. She is losing cartilage. We are praying for her cartilage to be healed and for this attack to stop. Now.
Still in all of this God is here. He gives us rest and we have peace in knowing that He is in charge. My heart breaks because my child is in pain but God knows that. There is a purpose in all of this and He still shows himself to be faithful and worthy of our trust. We have been given encouragement from strangers and really amazing friends in surprising ways that are clearly from Him alone. Haley is proof of God's grace being sufficient. We are so blessed.
Just over a week ago, a wonderful specialist in Atlanta has agreed to see Haley. We beat our heads against walls trying to find a doctor that would see her for the polychondritis and were rejected every time until this doctor. We are praying for him to be healthy, and for him to have wisdom when he sees Haley on July 28th. It was so miraculous for him to see her next month. We waited the entire summer last year for an appointment for her to see a pediatric rheumatologist. This would feel like nothing in comparison if it wasn't for her nose.
Her nose is where this whole polychondritis stuff started. For months, like since at least December, she would frequently complain of pain in her nose. I thought she had a pimples in it or maybe it was a side effect from something she was taking. It did look reddish at times but didn't seem like a big deal at all. When I finally remembered to mention it to her doctor, I quickly knew it was a big deal and that he should have known about it sooner. Last month, he did try to treat the inflammation by tripling her dose of prednisone for two weeks, but that didn't help and the side effects were horrible for her. He then decided that this was more than he could handle and gave us more names to contact. Now, after much (and I mean MUCH) prayer and waiting, she has an appointment with a big time rheumatologist that I believe will figure her out. But right now her nose is still what we refer to as "angry". Reddish, swollen and inflamed. The shape of her nose is changing. She is losing cartilage. We are praying for her cartilage to be healed and for this attack to stop. Now.
Still in all of this God is here. He gives us rest and we have peace in knowing that He is in charge. My heart breaks because my child is in pain but God knows that. There is a purpose in all of this and He still shows himself to be faithful and worthy of our trust. We have been given encouragement from strangers and really amazing friends in surprising ways that are clearly from Him alone. Haley is proof of God's grace being sufficient. We are so blessed.
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