This post should have been about all the school we accomplished this week and some of the interesting things that we learned. Alas, it is not. Best laid plans...
Anyway, we made it through lunch and were all poking around for something sweet to eat when I came across a Bumble Bar Chocolate Crisp bar I had purchased awhile back at the bottom of our "sweet tooth" basket. As always with a new food, I inspected the label, front and back, looking for any warning signs and ingredients. The first thing that struck me odd was how small the ingredient font size was on the back of the wrapper. I could barely read it at all. So, I flipped it over and inspected the front again and then looked for the bold-type warning signs. Nothing. No mention of peanuts or nuts at all. It was a chocolate crisp bar which is what they called the bar, and different from the company's "peanut" bar. I opened it and took a small bite of it and told the boys, if Josh could eat it, they could split it in half.
Josh picked up the wrapper and investigated it, as we've taught him to do, and found nothing mentioning peanuts either. As always, I gave him a very small bite as a taste test to make sure he didn't react to it, something we've always done since a toddler because of all of Josh's food allergies, not to mention my experience growing up with an anaphylactic reaction to eggs and fish.
He tasted it and wasn't impressed with it nor did he seem to have a reaction, so he moved on to looking for another treat he could have to calm his sweet tooth. We all settled in to watch our documentary when Josh mentioned his throat felt funny. This was probably 10-15 minutes after ingesting that small piece of the bar to taste test.
He made his way to the bathroom and began reporting what he was feeling inside his body, another thing we've taught him to do. He was having trouble swallowing. His lip was swelling. His eyes became very bloodshot. He said he had a lump in his throat which was growing. I remained calm as I got the benadryl out and his epi-pen. As I was asking him questions, he began to tell me that his symptoms were subsiding. And they were. His lips were not as pronounced and the splotchiness that had crept onto his face was disappearing.
This was not his usual response in a reaction. Typically, his throat itches, his lips swell, and he usually throws up. We then administer benadryl and monitor him and all signs of a reaction go away. This was not happening, though.
For the next 20-30 minutes, his symptoms of reaction would come and go. Literally. Come and go. He would be in a terrorized panic over his closing esophagus with awful wheezing and then 5 minutes later, he'd be calm, cleared up, and wanting to resume the documentary. I was baffled and in limbo for each time it "flared" up, I had the epi-pen out and ready to use it and just when I'd be ready to un-cap it, his symptoms would begin to subside. So, I'd wait and watch.
Now, there are two camps of opinion when it comes to epi-pens. Because epi-pens carry their own set of problems and side effects there are those in the medical community that adovcate not to use the pen unless it is absolutely, postively, beyond a doubt necessary. Defining "necessary" becomes the blurry part. Treat first with antihistamines, watch and see and then decide before using. Then, there are those that advocate at the first sign of a reaction, use it! Worry about any possible side effects of the pen later (some which include heart problems). Now learning that are three types of anaphylactic reactions, both opinions hold true, depending on which type of reaction is unfolding before your eyes. Up to this point, all of Josh's reactions have been able to be contained with benadryl (as have mine, minus one incident as a toddler involving touching a cracked egg at an Easter egg hunt).
I gave him 1 capsule of Benadryl, as we've done before to stop a reaction, and his body wasn't responding. 5 minutes went by. 10. His body still wasn't responding. At this point, I began to inwardly panic and told him that I was going to use the epi-pen on him. By the time I had it ready, all symptoms improved greatly. So, I watched and waited again.
Within another 10 minutes, he was back to square one and unable to breathe, swallow his own saliva. At this point, I should have used the pen but was so stunned and baffled by the whip-lash like responses. I gave him a second dose of Benadryl and knew we'd be going to the hospital one way or the other. This was too severe of a reaction to NOT go.
I told him that, if he could, he should try to throw up to get it out of his body and prevent his system from having to process this allergen. He did throw up several times and instantly his eyes cleared up and his swelling reduced. His breathing returned to normal (no more wheezing) and he seemed perfectly fine. We got dressed (it was PJ day, a rare thing in our house since I make everyone get dressed for school).
Chris came home from work and rushed him to the hospital since his outer throat was swollen at this point. My biggest regret is not sticking him with the pen and calling 911 immediately. However, I assumed that this reaction would be like all the others and would respond to Benadryl alone. I was wrong.
Jake was terrified that Josh was going to die; so, we cried and prayed together. Both Jake and my emotions had been riding the wave of this intense reaction - the ups and downs - over the course of 45 minutes. Jake has seen Josh have reactions before but none have ever been this intense and drastic. I hope we never have another like this again.
Josh was given an IV of steroids and two different anti-histamines and monitored for 4 hours at the hospital. During that time, rashes, swollen lips and mild reactions would come and go WHILE BEING TREATED WITH MEDS. Crazy, scary stuff. The doctors said the adult dosage of Benadryl is what kept him breathing. What a confusing, humbling, terrifying thought to have a doctor say to you.
He couldn't be left alone until his reactions had subsided because his lungs, despite the medicine, could decides to close up and cut off breathing, so Chris and I began a vigil of watching him. The first night, we didn't let him fall asleep until 4a.m. and the second night Josh fell asleep around 2. The remaining nights we let him fall asleep earlier (we were all so exhausted), in the living room, but we still watched him all night.
Josh did not stop reacting to the peanuts that he ingested (on Monday) until Friday morning. Thursday morning he had a strong reaction again where he began to struggle breathing, his lips swelled up and he began having difficulty swallowing. We all got dressed knowing another hospital visit was around the corner, and I called the advise nurse. I increased his dosage of Benadryl but kept his steroid and other anti-histamine dosages the same and that got rid of this secondary reaction.
I shutter to think what Josh's next reaction could look like if he ever gets hold of peanuts again. We both have agreed that we never want to go through this again.
I learned that there are 3 different types of anaphylactic reactions (Josh hit the most severe) and his pediatrician reviewed them with me. I also learned that to truly treat a reaction (as best as you can), both Benadryl and Pepcid AC needs to be given because Benadryl doesn't address both kinds of histamines our bodies produce. Dr. Cohen was helpful and caring through all of this. He says Josh was lucky. I say God was protecting as I don't believe in luck. Chris and I couldn't be more grateful for God's protection over that entire day. May Josh never come in contact with peanuts again. Amen.
Showing posts with label health. Show all posts
Showing posts with label health. Show all posts
Monday, April 23, 2012
Sunday, October 9, 2011
8 ways to deal with a chronically ill friend...
One of the surprising elements to come out of my recent Lupus flare is people's response to my health. Friends and acquaintances have shared their thoughts and, interestingly enough, their expectations on how my flare would play out. Many people shared that they have been surprised at how long I have been sick (some even casting suspicion on if that is even possible). I've had a few friends genuinely share that they thought I would be feeling better and back to my old self within a few weeks, a month at the most. Others have expressed frustration in how long and frequently I was ill. Still others were sympathetic but had no idea how to help or what was needed. It has been touching to see a friend's genuine love and care in a crisis.
While each chronic illness has it's own unique conditions and I can only speak based on my experience, I thought I would put together a list of how to respond to a chronically ill friend.
**Disclaimer: Please do not hear me say that a flare or chronic illness is an excuse for poor behavior, complaining, whining, or the platform to garner attention and sympathy. It shouldn't be used as an excuse for any of those behaviors. I hope this list provides some helpful insight into interacting with a person with a chronic illness.
So, here we go!
1) Pray. Pray for your friend. God hears 'em and can work out the health issue according to His will. Never underestimate the power of prayer.
2) Extend flexibility. Even if you don't understand how a specific chronic illness works, be flexible in what your friend or family member can do. Believe me, those experiencing a chronic illness do not want to 'flake' at the last minute on a planned event or commitment. Nor do they want to 'check out' of their normal activities. They don't want to miss out on the fun yet there are seasons when the illness and health takes priority. In my case, a Lupus flare is the time when the disease is in hyper-drive, causing internal (sometimes permanent) damage. If I don't slow down and yield to the disease, I can exasperate it, making the damage done worse. Often, a chronic illness requires day by day living as how I feel today doesn't predict how I'll feel tomorrow.
3) Offer encouragement. Battling a chronic illness is exhausting,frustrating and typically sends one into depression. The chronically ill person has to hand over reins to their life, at times, to the disease, and that is no fun. Be an encourager. Let the person know sunny days are just around the corner and the dark clouds will dissipate with proper rest and care.
4) Ask questions. I, for one, am open about my disease. It is not my identity, it is not something I want to focus on, especially when I'm feeling well but I am happy to answer questions. If you're unsure, please ask. I have been so surprised by how many assumed my flare would last as though it were just a common cold. The truth is flares are unpredictable and devastating. According to www.webmd.com, "Flares and remissions can occur abruptly, unexpectedly, and without clear cause. There is no way to predict when a flare will happen, how bad it will be, or how long it will last. When you have a lupus flare, you may have new symptoms in addition to those you have had in the past." I was surprised to experience frustration from someone who assumed I would be all better in a couple of weeks. Ask questions to prevent wrong assumptions and misunderstandings.
5) Lend a helping hand. Chronically ill patients have one thing in common - severe fatigue. Regardless of the disease, extreme fatigue is the common link. The body is extending all of its energy to fighting off the illness, leaving the body depleted of energy unable to do what we'd consider 'normal' acts. At one point over the summer I couldn't walk from the kitchen to the living room without being out of breath and needing to lay down. I'll be honest here - this bugs me and tweaks anger in me. I know it's silly but it's embarrassing that I couldn't walk across the room without having to sit down. I don't want to feel incapable or weak. I don't want to be seen as that way either (yeah, I know... pride issues). I want to do normal stuff. Cook dinner for my family. Walk to the park and play with my kids. Take a bike ride. Do laundry (don't WANT to do it but need to). Clean my house. Go on a walk. Try new adventures without having to consider pain level and how and when my joints will lock and stop working. Yet, when I'm in a flare, it is difficult to do these things. It is difficult to get out of bed. Literally. Putting aside the severe, heavy, debilitating fatigue that presses on the body like a boulder, most mornings my joints didn't get the memo that I want to move. Walking is something people take for granted. This combo - fatigue, pain and pride - make it difficult to ask for help. Go ahead and offer it. It is truly appreciated in a great time of need.
6) (Ok, this is going to get blunt here but..) Don't dismiss the knowledge. Yeah, I had to go here. I know people mean well but don't dismiss or second guess the one who suffers with a chronic illness. I know the intentions are good and, embarrassingly enough, I've done it too. But consider this... the person living with the illness is not only living it first hand but has most likely done a lot of reading on the subject (not to mention had lots and lots of doctor appointments). For me, Lupus (and the other auto-immune diseases I have because of it) is what it is. It looks different for different people. I know your aunt's cousin's niece only had one flare her entire life and to that I say your aunt's cousin's niece is lucky... and may not have Lupus (key word - MAY). While you may know someone with similar disease or circumstance doesn't make it so for all. To imply that only makes the person feel worse as though they are freaks.. or worse, hypochondriacs. What I know about Lupus comes from what I've experienced with Lupus. Everyone has different rates at which the disease presents itself and to what extent. The most consistent thing about Lupus (and all chronic illnesses, I imagine) is that it is entirely inconsistent. Allow the person to express their unique experience with the illness without dismissing it.
7) Respect boundaries. Understand that your friend or family member, if they know what's good for their health, will need to put boundaries in place. Perhaps it is avoiding certain foods or cutting back on activities once enjoyed by you both. You may not see as much of your friend during seasons when the illness is active. Please don't take this personally. It is not a reflection of the value of friendship or activity. It is, simply, a necessary step to take to regain optimum health. Sure, you may be able to eat what you want without consequence, require only 5 hours of sleep each night, and be active with groups and activities every night of the week but understand these things may not be possible for one with a chronic illness. Also, in order for health to continue to improve and avoid going back in a flare, boundaries most likely need to stay in place to maintain good health after the crisis has gone away. As of right now, I'm not completely out of my flare. Don't get me wrong, I feel immensely better BUT I am still battling fevers, fatigue and pain. I'm not totally out of the woods yet and the boundaries I've created in my life (and even went lax on the past few weeks) need to stay in place to regain my health. Unfortunately, that means I may not be able to volunteer in the same groups, activities or participate in all opportunities that come my way.
8) Recognize that your friend is still your same, 'ol friend deep down inside. Know that your friend is still your friend and diminished health doesn't change that. For me, I had little social interaction this summer, as a way to get more rest and turn my health around. It was a necessary step in order to regain my health and prevent permanent organ damage. When in a flare, anything and everything makes a flare worse. Know that your friendship is strong enough to weather a temporary health setback. Love each other and embrace each other..regardless of circumstances.
Let's face it. It's hard and even awkward to be around a chronically ill person. It's hard to relate or understand, especially if you've been blessed with good health. Trust me when I say that I wish I didn't have this. I hate the inconsistency it brings in my life.. not to mention the pain and diminished health. Some seasons of my life, I'm full of energy and ready to conquer the world and in others, I'm lucky to make it down the stairs. I hope that as my friend, you can rejoice with me in times of good health in my life and mourn with me in times of poor health.. as I hope to extend to you. Journeying down the road of chronic illness with supportive friends makes such a difference!
While each chronic illness has it's own unique conditions and I can only speak based on my experience, I thought I would put together a list of how to respond to a chronically ill friend.
**Disclaimer: Please do not hear me say that a flare or chronic illness is an excuse for poor behavior, complaining, whining, or the platform to garner attention and sympathy. It shouldn't be used as an excuse for any of those behaviors. I hope this list provides some helpful insight into interacting with a person with a chronic illness.
So, here we go!
1) Pray. Pray for your friend. God hears 'em and can work out the health issue according to His will. Never underestimate the power of prayer.
2) Extend flexibility. Even if you don't understand how a specific chronic illness works, be flexible in what your friend or family member can do. Believe me, those experiencing a chronic illness do not want to 'flake' at the last minute on a planned event or commitment. Nor do they want to 'check out' of their normal activities. They don't want to miss out on the fun yet there are seasons when the illness and health takes priority. In my case, a Lupus flare is the time when the disease is in hyper-drive, causing internal (sometimes permanent) damage. If I don't slow down and yield to the disease, I can exasperate it, making the damage done worse. Often, a chronic illness requires day by day living as how I feel today doesn't predict how I'll feel tomorrow.
3) Offer encouragement. Battling a chronic illness is exhausting,frustrating and typically sends one into depression. The chronically ill person has to hand over reins to their life, at times, to the disease, and that is no fun. Be an encourager. Let the person know sunny days are just around the corner and the dark clouds will dissipate with proper rest and care.
4) Ask questions. I, for one, am open about my disease. It is not my identity, it is not something I want to focus on, especially when I'm feeling well but I am happy to answer questions. If you're unsure, please ask. I have been so surprised by how many assumed my flare would last as though it were just a common cold. The truth is flares are unpredictable and devastating. According to www.webmd.com, "Flares and remissions can occur abruptly, unexpectedly, and without clear cause. There is no way to predict when a flare will happen, how bad it will be, or how long it will last. When you have a lupus flare, you may have new symptoms in addition to those you have had in the past." I was surprised to experience frustration from someone who assumed I would be all better in a couple of weeks. Ask questions to prevent wrong assumptions and misunderstandings.
5) Lend a helping hand. Chronically ill patients have one thing in common - severe fatigue. Regardless of the disease, extreme fatigue is the common link. The body is extending all of its energy to fighting off the illness, leaving the body depleted of energy unable to do what we'd consider 'normal' acts. At one point over the summer I couldn't walk from the kitchen to the living room without being out of breath and needing to lay down. I'll be honest here - this bugs me and tweaks anger in me. I know it's silly but it's embarrassing that I couldn't walk across the room without having to sit down. I don't want to feel incapable or weak. I don't want to be seen as that way either (yeah, I know... pride issues). I want to do normal stuff. Cook dinner for my family. Walk to the park and play with my kids. Take a bike ride. Do laundry (don't WANT to do it but need to). Clean my house. Go on a walk. Try new adventures without having to consider pain level and how and when my joints will lock and stop working. Yet, when I'm in a flare, it is difficult to do these things. It is difficult to get out of bed. Literally. Putting aside the severe, heavy, debilitating fatigue that presses on the body like a boulder, most mornings my joints didn't get the memo that I want to move. Walking is something people take for granted. This combo - fatigue, pain and pride - make it difficult to ask for help. Go ahead and offer it. It is truly appreciated in a great time of need.
6) (Ok, this is going to get blunt here but..) Don't dismiss the knowledge. Yeah, I had to go here. I know people mean well but don't dismiss or second guess the one who suffers with a chronic illness. I know the intentions are good and, embarrassingly enough, I've done it too. But consider this... the person living with the illness is not only living it first hand but has most likely done a lot of reading on the subject (not to mention had lots and lots of doctor appointments). For me, Lupus (and the other auto-immune diseases I have because of it) is what it is. It looks different for different people. I know your aunt's cousin's niece only had one flare her entire life and to that I say your aunt's cousin's niece is lucky... and may not have Lupus (key word - MAY). While you may know someone with similar disease or circumstance doesn't make it so for all. To imply that only makes the person feel worse as though they are freaks.. or worse, hypochondriacs. What I know about Lupus comes from what I've experienced with Lupus. Everyone has different rates at which the disease presents itself and to what extent. The most consistent thing about Lupus (and all chronic illnesses, I imagine) is that it is entirely inconsistent. Allow the person to express their unique experience with the illness without dismissing it.
7) Respect boundaries. Understand that your friend or family member, if they know what's good for their health, will need to put boundaries in place. Perhaps it is avoiding certain foods or cutting back on activities once enjoyed by you both. You may not see as much of your friend during seasons when the illness is active. Please don't take this personally. It is not a reflection of the value of friendship or activity. It is, simply, a necessary step to take to regain optimum health. Sure, you may be able to eat what you want without consequence, require only 5 hours of sleep each night, and be active with groups and activities every night of the week but understand these things may not be possible for one with a chronic illness. Also, in order for health to continue to improve and avoid going back in a flare, boundaries most likely need to stay in place to maintain good health after the crisis has gone away. As of right now, I'm not completely out of my flare. Don't get me wrong, I feel immensely better BUT I am still battling fevers, fatigue and pain. I'm not totally out of the woods yet and the boundaries I've created in my life (and even went lax on the past few weeks) need to stay in place to regain my health. Unfortunately, that means I may not be able to volunteer in the same groups, activities or participate in all opportunities that come my way.
8) Recognize that your friend is still your same, 'ol friend deep down inside. Know that your friend is still your friend and diminished health doesn't change that. For me, I had little social interaction this summer, as a way to get more rest and turn my health around. It was a necessary step in order to regain my health and prevent permanent organ damage. When in a flare, anything and everything makes a flare worse. Know that your friendship is strong enough to weather a temporary health setback. Love each other and embrace each other..regardless of circumstances.
Let's face it. It's hard and even awkward to be around a chronically ill person. It's hard to relate or understand, especially if you've been blessed with good health. Trust me when I say that I wish I didn't have this. I hate the inconsistency it brings in my life.. not to mention the pain and diminished health. Some seasons of my life, I'm full of energy and ready to conquer the world and in others, I'm lucky to make it down the stairs. I hope that as my friend, you can rejoice with me in times of good health in my life and mourn with me in times of poor health.. as I hope to extend to you. Journeying down the road of chronic illness with supportive friends makes such a difference!
Monday, May 23, 2011
I am the face of Lupus...
and you can't really tell, can you? That's because there are rarely outward signs of Lupus, and many other auto-immune diseases. It is a disease that lurks within attacking all those areas in my body it so chooses. Normally, the body creates antibodies when a threat appears to the body. With auto-immune diseases, the body creates Anti-Nuclear Antibodies (ANA) that attacks the GOOD antibodies AND anything else that is helpful (organs, blood, bones, vitamins, nutrients, babies... yeah, all that good stuff).
There is no cure and not a promising future. Lupus, as with many auto-immune diseases, shortens one's life. The dangling thread of hope is that the disease goes into remission. For a long time. Unfortunately, remission isn't a formulaic procedure. if I follow these steps and this treatment, then it gets under control. I wish it were so simple. In fact, remission is so dependent on a variety of possibilities and, even then, a patient could be doing everything right; have all pieces of the puzzle in place and the disease still roar out of control.
So, I'm in a flare. Trust me, it's not as exotic as it seems. In fact, it's frustrating, painful, inconvenient, exhausting and dangerous. Not necessarily in that order. A flare means the disease is not only actively destroying parts of my body but is overactive; so it's in hyper drive. This is dangerous because it can cause the same damage (or even death) at a faster rate than it is normally doing damage to organs. And I'm not just talking AN organ. It's got the entire buffet to choose from - kidneys, liver, skin, brain, heart, lungs, pancreas, connective tissue, muscles, skeletal system, etc. My body is in such a hyper active mode right now that the onset of my period (sorry for going there) puts my immune system into attack mode - with fever, body chills, etc. So bizarre!
I am concerned about the damage that could be occurring but no one can stop. I am concerned that when it's waging its war against my body, what permanent damage will I be left with. Yet, this.. this is the most troublesome component of having Lupus: how it effects our home life.
When the Lupus is active, it changes how I am as a wife and mom. I cannot do the same things I can when I'm not under attack. I do not have the same energy, attention or quality of care as I do when Lupus is in its cage. I am not me when it flares... and I can't STAND that! To see the quality of my home life, the interactions with my husband and children suffer at the hands of this dumb disease, truly breaks my heart because since I was in Kindergarten, all I've ever wanted to do was be a stay at home wife and mom ( I had a few other dreams here and there but this was my heart's desire). It makes me so sad to not be able to do the normal, everyday things I should/could/would do if I didn't have this limitation!
However, despite my frustration, I know I'm held in the palm of my Creator's hand. The Bible is very clear that we have bodies that are imperfect and will deteriorate and fade away. I actually discovered a blessing in my last flare-up some years ago. Instead of seeing it as the enemy (which is sometimes hard NOT to do), Lupus, or any disease, can be God's way of prompting us to change the pace of our life. It can be a friend who is forcing us to take it easy. It can be a wonderful way to remind us to slow down and spend more time taking care of ourselves and our loved ones. It is a wonderful way of creating healthy boundaries in one's life. I know that He is in control, not the Lupus. My temporary panic of learning I'm in a flare is being overcome with the reality to rest easy in His arms and listen to the promptings to let go and let God, once again.
There is no cure and not a promising future. Lupus, as with many auto-immune diseases, shortens one's life. The dangling thread of hope is that the disease goes into remission. For a long time. Unfortunately, remission isn't a formulaic procedure. if I follow these steps and this treatment, then it gets under control. I wish it were so simple. In fact, remission is so dependent on a variety of possibilities and, even then, a patient could be doing everything right; have all pieces of the puzzle in place and the disease still roar out of control.
So, I'm in a flare. Trust me, it's not as exotic as it seems. In fact, it's frustrating, painful, inconvenient, exhausting and dangerous. Not necessarily in that order. A flare means the disease is not only actively destroying parts of my body but is overactive; so it's in hyper drive. This is dangerous because it can cause the same damage (or even death) at a faster rate than it is normally doing damage to organs. And I'm not just talking AN organ. It's got the entire buffet to choose from - kidneys, liver, skin, brain, heart, lungs, pancreas, connective tissue, muscles, skeletal system, etc. My body is in such a hyper active mode right now that the onset of my period (sorry for going there) puts my immune system into attack mode - with fever, body chills, etc. So bizarre!
I am concerned about the damage that could be occurring but no one can stop. I am concerned that when it's waging its war against my body, what permanent damage will I be left with. Yet, this.. this is the most troublesome component of having Lupus: how it effects our home life.
When the Lupus is active, it changes how I am as a wife and mom. I cannot do the same things I can when I'm not under attack. I do not have the same energy, attention or quality of care as I do when Lupus is in its cage. I am not me when it flares... and I can't STAND that! To see the quality of my home life, the interactions with my husband and children suffer at the hands of this dumb disease, truly breaks my heart because since I was in Kindergarten, all I've ever wanted to do was be a stay at home wife and mom ( I had a few other dreams here and there but this was my heart's desire). It makes me so sad to not be able to do the normal, everyday things I should/could/would do if I didn't have this limitation!
However, despite my frustration, I know I'm held in the palm of my Creator's hand. The Bible is very clear that we have bodies that are imperfect and will deteriorate and fade away. I actually discovered a blessing in my last flare-up some years ago. Instead of seeing it as the enemy (which is sometimes hard NOT to do), Lupus, or any disease, can be God's way of prompting us to change the pace of our life. It can be a friend who is forcing us to take it easy. It can be a wonderful way to remind us to slow down and spend more time taking care of ourselves and our loved ones. It is a wonderful way of creating healthy boundaries in one's life. I know that He is in control, not the Lupus. My temporary panic of learning I'm in a flare is being overcome with the reality to rest easy in His arms and listen to the promptings to let go and let God, once again.
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