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    amcate posted:
    For the third time this year, I'm on the pred again (sounds like "on the road again" song....perhaps there's a parody that can be made).

    I'm not sure what triggered it, perhaps not wearing the mask as much, perhaps missing a few (and I mean literally one or two) dosages of Advair (normally this would not be enough to trigger an exasberation), or perhaps last Sunday in church when I didn't have a seat to sit on or an order of worship because yet again (it's a problem that repeats itself) people failed to understand what medical issues I have (asthma is one, but there are others) and so I didn't have anywhere to sit, in essence-but it's a long story. People yet again say, "we didn't know", but I'm not sure how much I can tell them over and over-I had to walk out in the middle since someone took my seat (again, long story) and so missed World Communion day and was upset.

    I took 40 mg last night, 40 mg this AM, 40 mg this evening, and will take 40 mg tomorrow morning, and then 40 mg every 24 hours for up to 10 days depending on response. It's a strange bursting schedule, but honed by trial and error over 12 years of dealing with this (curse word). So, I'm sure I'll be up all night....oh, well like the prednisone song lady sings on youtube, the good things is I'll catch up on all the reruns of shows and all my CDs will be in order. Fortunately, I'm off from work anyway. After a week the apartments still hadn't changed out my air filter on the AC/heater, and so I reminded them of it, and they took care of it within a few hours of the reminder.

    Even after 120 mg of pred over the last 24-36 hours, I still can't take a deep breath without the lungs spasming, get fluid in the lungs that I hack up (it's all that clear, frothy stuff), and have that twitchy feeling-it's hard to describe that feeling, just twitchy, when I breath. Last night I was speaking to a friend, and I kept spasming and coughing whenever I would laugh (laughter is a trigger, but only when I'm poorly controlled), and took the Combivent. It's funny, but I can actually feels exactly when it starts working....there's no word for that feeling, but I can say "oh, it's kicked in now". I hope this isn't one of exacerbations that don't respond well to the pred. Sometimes I have to go off of it, then go back on it (again, weird schedule, but honed from experience....adrenal glands have always been okay.) That will be fun....moods will get all weird. Like the prednisone song on youtube says, "with prednisone your moods are up and down, with prednison your face is big and round, so take some prednisone, live your life alone today."

    It is discouraging at times because I am coming to accept that this will probably not get better since I've done all I can.

    I'm sure you all can relate.
    amcate responded:
    I misspelled "exacerbation". Blame it on the phonetics approach they used to teach me to read .... ....and the self responsibility .

    Anyway, after the fourth 40 mg each 12 hours taken this AM, I'm finally taking a deep breath without spasming and fluid coming up. Twitchiness still there some, but not as much. You never appreciate the beauty of a full breath of air without the lungs wigging out of you and all that clear, frothy fluid and weight from it and spasming until you have it taken away. Just breathing, feeling the air go in and out, still a bit of coughing up fluid...but not much. You never know what you miss until it's taken from you.

    Prednisone, it's a love/hate relationship. Now down to 40 mg each 24 hours...wish me luck. The nice things is I have a good excuse to eat a lot of chocolate.

    Still don't like that its the third bust this year, I've surpassed yet again the limit the MD says he believes is safe in the long term....tell it to my lungs, though.
    amcate responded:
    I'm unsure if I should write, but am just sharing/venting experiences. Normally, I would be going off of prednisone tomorrow (typical 5 day burst), but it can be extended to 10 days. In the past, my doctor has reached the conclusion, "your guess is as good as mine"...meaning he doesn't know and has given me directions of when to go to urgent care or the ER. I am okay for now.

    I had another attack today, which is something the textbooks say shouldn't happen after 5 days or so of 40-80 mg of prednisone. It responds okay to rescue meds, but now is my decision whether to continue the prednisone tomorrow or not. Again, my MD has said in the past he honestly doesn't know and I have instructions of when to go to ER.

    On the one hand, discontinue it means I'll probably have to take nebs every 4-6 hours to keep breathing while going on a train/bus trip but then again whatever is causing this will more likely show symptoms (ie, if I got an infectin, it will show and give me more information as to what to do). On the other hand, continuing prednisone will offer better control of the asthma for now but will not necessarily give any useful information as to the trigger and I have to discontinue in 5 days. Perhaps it just needs more time on prednisone and will be okay? Who knows, the doctor doesn't and I don't know either. Once, my doctor said it was a matter of "try this, and if it works, keep doing it. If not, then switch. You can't know ahead of time." So, it's a coin toss. I just checked my purse to be sure I have the emergency 40 mg of prednisone and also the portable neb with vials is there for the trip.

    This happened at a bad time-I had a benign growth removed early last week, and I'm going on the train/bus trip tomorrow to get the staples removed. That MD will get to hear about the prednsione and should know from that that it will be hard to determine if the suture line got infected or not. He removed the growth before I had to go on prednisone, so neither one of us knew. I've kept it clean, dry, and covered, so theoretically there should be no problem. I can't just leave the staples in as the skin is starting to grow over them.

    It gets discouraging at times, but I guess you just play the hand you're dealt.
    sgbl88 responded:
    Hi amcate,
    I just wanted you to know that I am praying for you. I can't read your posts right now, but I am praying for you.

    Keep you chin up.

    Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
    amcate replied to sgbl88's response:
    Sonya-you are kind and thank you for acknowledging my posts.
    amcate replied to sgbl88's response:
    This is an update. The lungs are not great, but not bad...holding their own, sort of want to get out of control but not really. So, I'll continue to control as many triggers as possible to try to stay off of prednisone.

    The wound is not looking so good after getting off the prednisone, but I don't know what I'm looking at, and so will keep it clean and dry and covered and see if it doesn't take care of itself. If it doesn't get better, I'll revisit the PCP.

    As a funny story (you got to laugh, right?) when I saw the PCP it was the first day off of pred and I had exposure to irritants as I take the bus and train to get there. So, I did the neb and Combivent, etc. as needed but unfortunately forgot the peak flow meter at home. I'm at the PCP office, and the medical assistant was asking me to hurry up and why can't I move so fast. I let her know of the prednisone since it affects wound healing and chances of infection. She got my blood pressure, but nothing else, and told me to wait in the room at the back with the door closed and the doctor is running late, but should be in in the next 45 minutes. I said, "okie, dokie, then...." and just monitored myself for needing additional rescue meds. When he came in, I said, "I'm here to get the sutures out, and by the way, I've had to take prednisone over the last week, and this is my first day off. I've had one neb treatment and 4 puffs to Combivent today and have been having some problems with breathing due to unavoidable exposure to triggers, but I'm fine right now...I've stabilized myself. My lungs feel open to me." You should have seen the look on his face! I'm laughing about it. In all fairness, you wouldn't expect a medical assistant at a PCP office to know about asthma.

    So, I feel good, I'm at peace now, and we'll see how it goes.
    amcate replied to amcate's response:
    Another update-the wound looks more weird as time goes on, so I called the PCP office today and have an appointment for Monday. A person at work does wound care, and did not look at it, but said from the history I was giving it was probably okay and when the PCP took out the sutures the skin probably separated since it probably didn't heal well while I was taking prednisone. They told me everything I was doing was the right thing to do until I can see the PCP again. (keeping it clean with soap and water, putting antibiotic ointment on it, and covering it with gauze and paper tape to secure the gauze since I get atopic dermatitis to some bandaides and hydrogen peroxide.)

    In terms of asthma, I don't know what to make of it, so your thoughts might be helpful. On the one hand, I'm coughing up that clear fluid, and I have a cough that echos like when you're in a cave-it's not my normal cough. I feel tight. Yet, when I take my peak flows measurements I'm at 90%. When I saw the head of the board of allergy, asthma, and immunology in Texas, he said that under such circumstances the symptoms are not asthma since the peak flow is so high. Therefore, he recommended not treating for asthma, since what are you treating if the asthma is not causing the problems? However, if the peak flows are borderline-82 or 83% for example, with symptoms, then treat for asthma with rescue meds. So, I haven't used the rescue meds, and the lungs aren't getting better, but they aren't getting worse. They feel different than normal, but the peak flows are very strong and no where near a yellow zone. I'm not coughing up anything with color to it, so I have no idea-just monitoring peak flows as I go.

    Let me know if any of you have had such a thing as this happen with your lungs.
    amcate replied to amcate's response:
    Hi, Sonya.

    I don't know if my last post went through-sorry if this is a repeat.

    It turns out the peak flows were varying between 70-90 % of expected value. A friend of mine emailed pictures of a fire that is happening about 9 miles from me and said they were doing controlled burns, which I was not aware of.

    The wound from the outpatient surgery is on my back, so I can't see it well. The PCP said to try to avoid prednisone if at all possible due to greater likelihood of infection and impaired wound healing that prednisone causes. I've worked in healthcare and have seen what the worse case scenario can be for infected wounds, including osteomyelitis and even one case where a knee replacement ended with amputation (which is highly unusual for knee replacements).

    So, I've added Flovent 220 to Advair 500/50 and am continuing all the other control things, and I'm relying heavily on rescue meds. I woke twice last night and had to used Combivent, but it did work quickly. I woke up this afternoon (as last night was difficult I slept late) and was spasming and coughing, so took some more. I may start doing nebs routinely to get me through until the wound looks good. I have refrigerated air, and am running the air conditioner so the air goes through a filter and am staying inside as much as possible.

    The PCP will be looking at the wound tomorrow, so we'll see what he wants to do.

    I'm going to go out and get chocolates today and sit and watch TV and eat chocolate .
    amcate replied to sgbl88's response:
    Sonya, I went to the PCP today. He wants to let the wound heal on its own, but wanted me to use something that donates moisture to it. The medical assistant had a hard time letting me put on a gown and wanted me to keep my shirt on instead. I didn't agree since the wound is hard to reach on my back, and the PCP nearly choked me with my shirt as he was trying to look at it. He then left the wound uncovered and was going to let my shirt get all in it. At that point, I asked for a gown so the wound would not get infected and not have clothing get into it, and at that point, he agreed.

    When he looked at it, he said the paper tape was irritating my skin, and I looked at it and had to explain to him the marks were from me scratching as the wound itself was itching, but I didn't scratch the wound by only around it. I know this sounds gross...sorry. Anyway, my point to him was that it wasn't from paper tape because I don't respond to paper tape.

    I had to explain to him how I respond to bandaids, and he said, "well, you should be cleaning it every day." I looked confused, and said, "I do clean it every day, but then of course put something over it to cover it. If I use a bandaid adhesive every day for several days in a row, the skin gets irritated and has an atopic reaction." He gave me some duoderm, and I told him applying a small sheet would be difficult since the wound is on my back and I have to look in the mirror and reach in a hard to reach place. He saw I could reach it, but I had to try to explain to him that I've tried to put bandaids on the area, but it's hard to look in the mirror at the same time-it's hard to's in a place that is hard to reach while at the same time seeing it in the mirror.

    So, he gave me several options, including small sheets of duoderm. He said he was unwilling to get me a larger sheet of duoderm because they are five dollars a sheet He gave me some large bandaides, and some large non absorbant gauze with some weak adhesive. The weak adhesive may or may not keep the dressing in place. Anyway, the gauze I've been using does stay in place, but the reason he doesn't care for it is that it absorbs instead of donates moisture.

    In the end, though, he said that it was not infected and as long as it stayed not infected it should heal and I would have a scar. I told him after he removed the sutures it had a squishy feel to it under where the sutures had been. He said he perhaps should have kept the sutures in longer, but was concerned with infection. He then asked me again why I used the prednisone.

    I told him I used it so I could breath. He said, "are you sure Singulair doesn't work for you?" I said, "yes, I used it for years, and I don't notice a big difference-maybe a small difference, but it has no effect on the total amount of prednisone I use per year. Besides, I found out that there was a fire close to where I live." He said, "so, couldn't you have put yourself on Singulair before the fire?" I said, "Singulair does not have a large effect for me, and I can't predict when fires will occur." He said, "well, this probably happened to the wound due to the prednisone." I said, "yes, I am aware of that. Pollution is one the strongest triggers for my asthma, so which is more harmful to the wound-me not breathing and having anoxic brain injury as a result or the prednisone?" He said nothing more.

    So, bottom line-the wound is clean, the options he gave me may not work since my skin may react or I may have a hard time getting the dressing on the wound as its in an ackward area that its hard to reach while seeing the area clearly in the mirror, but I do have an option to keep it free of infection even if it doesn't have the ideal amount of moisture. He thinks that as long as I keep it free of infection it should heal well on its own. Just in case, he gave me a script for antibiotics and told me the signs of it being infected.
    amcate replied to sgbl88's response:
    Sonya-another update.

    The wound is very slowly healing. The asthma is so-so. I'm taking the rescue drugs before the controllers to get more of them in and also continue with the increased controller medicine. I've had to stay indoors a lot as well. I have attacks every day, though....they do respond to the rescue drug. I can't take prednisone due to the wound.

    I was sitting at the bus stop when a lady approached me and gave me was religious and stated that typically when folks have chronic disease God is punishing them and people shouldn't take medicines because if they do they are leaning on the arm of flesh and not trusting God, thereby incurring more of the wrathe of God. It says that people with chronic disease are great sinners and must have done something really bad to deserve God doing that to them. She gave it to me after seeing me take rescue medicines due to the bus exhaust. So, there you go.....
    sgbl88 replied to amcate's response:
    Oh, that makes me SO VERY angry. She is truly ignorant of what the Bible says.

    John 9 tells about a man who was born blind. Many asked who sinned, him or his parents. Jesus said neither had sinned. Sickness can be a judgement for sin, but not always.

    The Bible recommends the use of alcohol medicinally. In Proverbs it is used for pain relief, and Paul's writings suggests using it for stomach issues.

    The disciple/apostle Luke was a physician. No where does it suggest that he quit practicing medicine. It is thought that he may have traveled with Paul on his missionary journeys as his physician.

    Jesus was offered wine mingled with myrrh, a sedative which he refused it Mark 15:23. However, in John 19:30 he received the drink and then cried "it is finished". So, Jesus did take a drink of the sedative sedonds before he died, but He still took it.

    Matthew 9 and several other gospels tell of a women with an issue of blood who had sought help from multiple doctors. Jesus never condemns her for seeking the help of doctors, but does praise her faith for coming to Him for healing.

    Many herbs are mentioned in the Bible. Many of the these herbs are known for their anitbiotic, anit-inflamatory, and other medicinal properties. The Bible does validate the use of herbs for medicinal purposes. Most medications are refined from natural resources like herbs, tree bark, animals, etc.

    So, I hope you can now see that the Bible in no way condemns anyone for turning to medicine for healing. You are not incurring God's wrath by using medicine.

    I have told my GP (we go to the same church) on several occassions that I am very thankful that God allowed me to live at this time with the meidcal technology that we have instead of even just 50 years ago. Ultimately, all knowledge comes from god. Therefore, the knowledge pharmaceutical companies and doctors have has been granted by God. To say that He does not want us to use that knowledge is ludicrous.

    There is a problem when we seek help only in medicine and ignore God's power and authority in using those medications for healing. We do still need to be praying for God's healing.

    Sorry to rant on this, but I have struggled with this issue myself. People in their arrogant self-righteousness find it easy to judge when they have no idea what God is really doing!!

    Take care and feel better.

    Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
    amcate replied to sgbl88's response:
    Sonya, the literature she gave me is very long, so I'm reporting a synopsis of what I understood it to say. There was one page that mentioned God using herbs in the Bible and that it is okay....but then almost all other mentions of medicines and going to doctors in their over 45 pages condemns it. For instance, they mentioned a girl who hurt her wrist with what sounds like a carpal bone coming out of the wrist and she couldn't use it for a year and half, and it mentions that she was told God was teaching her patience, but there is no mention of getting the girl to a doctor to reduce the bone back into place so I'm assuming they didn't do that. The do mention that in a minority of cases God could be teaching a person something, but that almost always chronic illness is the patient's fault (this is explicitly stated in one of their articles) and God is punishing them for being such a wretched sinner. At the same time, an insert that was put into the literature is political and seeks to decrease controls on air pollution.

    I shared the information with a friend of mine of 20 years who grew up Southern Baptist. He was "dumbfounded" and said it presented a very extreme view. He looked them up on the internet, and then gave me their web pages. It turns out they have had a legal case against them, and also some of the mainline denominations have stated their theological views are way off and unBiblical. Some mainline denominations have said their theological understanding is overly legalistic and they have forgotten grace. I didn't see it on the group's website, but one webpage said the group claims mainline denominations are going to hell. They have a camp that people live in and the leaders are authoritarian, so some websites call them a cult. I tried to get from their website more information to tease apart exactly where they stand since they did have one page out of 45 (or more) that mentioned herbs can be used in healing, but was unable to find anything. Mostly what I found is a very legalistic/Torah type of teaching. To be truthful, I thought there were some valid aspects to some of their theological teaching apart from their views on illness. But, yes, I agree that telling a person who has a chronic illness that they are a wretched sinner who God has rejected and they shouldn't take their medicines and then adopt policies that would increase air pollution was very concerning to me. As I've said, they do have a history of lawsuits against them from former members. However, I do not know if the claims against them are valid as the group did not show up to court. So, they are unsubstantiated claims.

    I once had a guy with Parkinson's disease ask me what horrible sin he committed. I didn't know how to respond, except to say, "well, we've all sinned, and God sees you through the blood of Christ, so when he sees you he sees you through his love and no matter what you have done or failed to do you are infinitely valuable in His sight." It was grace oriented, so I don't know if it was the right thing to say, though.
    sgbl88 replied to amcate's response:
    I am glad that you did do some research on the group. It doesn't sound like they laid a guilt trip on you, which was a main concern. With your health issues that would be the last thing you need. Faulty doctrine is always a huge concern. It does sound like they are a legalistic group, whoever they are.

    You are exactly correct about with your response to the Parkinson diseased man, all that matters is that we have placed ourselves under the blood of Christ. Ultimately, God's grace is all that we have. We certainly deserve much worse.

    I think of my illness several ways, but one is "Why not me?" Why should I think of myself as in anyway being better than the next person so I shouldn't get sick? If He can use my illness to in anyway encourage someone else, to cause a doctor to seek knowledge that helps someone else get better faster, to draw me closer to Him, God is working in His way for His purpose. Isaiah 55:8&9 apply as well - I cannot presume to know what God is thinking when He allows things to come into my life. He has His own plan and purspoe that is beyond my comprehension. There is an old Twila Paris song "Tapestry" that relates. We are looking and the bottom of a tapestry with loose ends and other things that distract from the image that is being woven. God is looking at the top side that is a beautiful image.

    It is too late and I am rambling.

    Have a great week.
    Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
    amcate replied to sgbl88's response:
    Don't worry about rambling. The woman herself just asked if I wanted literature and then gave the book to me, like when folks hand out tracks. The majority of the literature is very harsh toward those with chronic health issues, and does sound like it lays a guilt trip on folks.

    However, I come from a hyper grace and sola gratia environment and was strongly encouraged to think for myself. So, I can read things like this and try to understand where they are coming from and then attempt to evaluate for myself if it holds validity. So, although it upsets me some, my approach is to ask myself if I can control them and then to look at myself and see what the Bible says in how to respond and ask God to help me to grow so I can respond in a loving way. Writings like that do make it harder, though.

    In terms of the Parkinson's patient, I honestly didn't know why he had Parkinson other than the medical explanation. So, I didn't really answer his question other than to say that hating yourself in the present isn't going to help anything, and in the end we all are sinners and everyone makes mistakes, and emphasizing the unconditional nature of God's love. The guy was crying, and so I thought, "well, what would love say?" I didn't want him to hate himself because that would only pull him into a deeper mental hell than he already was in. So, I said, "you're hurting, so love yourself and be kind to yourself. When in doubt, douse it with the energy of compassion." That's my sola gratia background coming through.

    Anyway, it's hard to deal with folks who don't understand, and I'm still learning, God willing I'm continue to learn as long as I'm alive.

    Have a good week as well.
    amcate replied to sgbl88's response:
    Sonya-I also wanted to let you know that the group teaches that if a traditionally non Christian country has a natural disaster then we should not respond with love simply because they are human beings, but instead should rejoice since God is punishing them and to love them would be to go against God. The typical teaching I've been exposed to is to provide physical aid, hand out gospel tracks and teach Christianity, but whether the person accepts Christ or not you still provide physical aid regardless out of love and then you look to see what caused the disaster (like in Japan with the nuclear issues) and attempt to look at public policy to prevent it in the future in its in your control. It's for reasons like this that other Christian groups have spoken out against their teaching. Due to some of their other teachings, a Christian radio station that initially broadcasted their sermons stopped giving them air time. I just read this yesterday on the internet as the Southern Baptist guy and I were researching the group.

    Anyway, turns out my PCP was correct and the gauze was in fact causing a reaction-I looked at the area today and there were huge bumps and redness everywhere and it itched like crazy. So, I decided I should have listened to him and tried the best I could to put the Duoderm on there, but it took three tries to get it in the right space. He said it would heal regardless as long as it didn't get infected, but the Duoderm would get it to heal very fast and then I wouldn't have to worry about the wound and could take whatever I needed for the asthma, including prednisone. Meanwhile, I'm still having 2-3 attacks a day that respond very quickly to rescue meds. Also, despite the allergic reaction the wound itself is closing and is much smaller than it has been and much less deep. It continues to have no signs of being infected.

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