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Musical_Starling
November 24th, 2012, 11:17 PM
I remember back in August when I got back from my trip to the hospital for this (apparent) asthma that a lot of you said you have asthma as well (or a close family member with asthma). Well, I have to vent, and maybe some of you have been here and can help :( It's a VERY long one though, so you have been warned!!

So back at the end of August I ended up in the ER with severe shortness of breath. Got given nebulizers like they were going out of style, then sent home with a peak flow meter, three days worth of Prednisone and a prescription for Symbicort. So I took the Prednisone (did nothing as far as I could tell) and then started on Symbicort, 200/6 4x a day. For two months I took the Symbicort, and no real improvement. My peak flow went from 140/150 (in the ER) to about 170. Not a huge improvement. Saw a respirologist, was told to keep going with the Symbicort and I would get a pulmonary function test soon. Turns out "soon" is February 14th. So I tell my family doctor (GP) that I need something different. It's now October and I'm still feeling like garbage. So we try Flovent (250 mcg 4x a day) and it seems to help a LITTLE more than the Symbicort, but PF is still only around 225/230. So GP gets a respiratory therapist to come in and administer a spirometry test. I take the test, do horribly (can't even get the "peak" in the graph that they like to see and start to see black spots, and something about my numbers being below 80?) and then take my Ventolin, 15 mins later do the test again and do a little better (15% improvement, or so I've been told). So good news, it responds to medication. Awesome. But I still don't have a diagnosis. We're calling it "asthma" (even using finger quotes when talking) but there's been no official diagnosis. Also, I'm having some airway restriction which they can't quite explain (other than the fact that I'm overweight, but I thought round WAS a shape...) so I need to see the respirologist AGAIN. *sigh* In the meantime, he gives me Alvesco to try, I think it was 200mcg 2x a day. After a week, I'm one 5-minute walk away from a full blown asthma attack. PF is dropped back to 160/170. I'm coughing so much that my chest feels like I've pulled a muscle. And I'm taking my Ventolin 5+ times a day. I get up to walk to the bathroom (which is LITERALLY the next room to mine) and I'm out of breath. So today I called the pharmacy and got my Flovent refilled and tossed the Alvesco in the trash. No real improvement yet, but I didn't expect anything this quickly.

I'm really getting frustrated at this point! If it looks like a duck, and walks like a duck, and quacks like a duck, then it's not a cow! Nobody wants to use the "A" word, and I'm being tossed from one drug to another like I'm a guinea pig. Not to mention that I have no insurance, and each puffer is $100 a pop (I've spent over $500 in puffers since August, and that's not counting my Ventolin every three or four weeks.) What do I do from here? Pulmicort is the same steroid as Symbicort, so I'm thinking that one is out as the Symbicort didn't work. The only steroid left is QVAR. I haven't added any long-term bronchodilators yet, nor have I tried either of the pills, but I'm really getting fed up with not being able to live. Even on my best day since August, I can't walk up my stairs without having to stop part way. I live in a split-entry house, and thank God there's a landing in my entrance to stop on or else I'd never make it up from the basement. Lately, the basement is the forbidden land as I can barely make it up from our front door (which is about 7 steps I think). So every day consists of sitting in bed, doing a little hand sewing. I did manage to get some good sewing done with Sally (my new machine) about a week ago, but since starting the Alvesco I've gone so far downhill I can't even think about trying to cut any material or sew. I'm 26 (27 next weekend) and yes, overweight, but certainly not enough to be causing serious health issues.

I'm getting really frustrated now because I have Christmas gifts to make and mail to my SS, MIL/FIL, and DH's grandmother. Plus I wanted to make gifts for my parents and sisters and that doesn't look like it's feasible at this point. I'm so stressed out that I can't even function, and my left eye is twitching worse than it ever has before. *sigh* This has become a very, very long rant. And I apologize :( I just don't know what to do, and I'm hoping that maybe some of you who suffer from asthma might think of something while reading that helped you or something. At this point, I'm desperate! And if you read all of that, then you're very kind and patient :) Thank you!

Lisaau
November 24th, 2012, 11:37 PM
Musical starling l've got asthma as well or "l USED TO HAVE ASTHMA" ... l should say............l've been taking magnesium tablets since April and l haven't used any type of asthma puffers or meds since April.........l was put on the magnesium by my doctor........if you go to google and type in "asthma and magnesium " you will see a wealth of information about how magnesium helps with asthma ..hope you feel better soon.

Lisapc
November 24th, 2012, 11:57 PM
How much magnesium? I get weather related asthma every winter and would like to avoid it this year if I can.

Musical_Starling
November 25th, 2012, 12:04 AM
Musical starling l've got asthma as well or "l USED TO HAVE ASTHMA" ... l should say............l've been taking magnesium tablets since April and l haven't used any type of asthma puffers or meds since April.........l was put on the magnesium by my doctor........if you go to google and type in "asthma and magnesium " you will see a wealth of information about how magnesium helps with asthma ..hope you feel better soon.

I take a multivitamin that includes 50mg of magnesium, and I'd like to look into my magnesium levels in the future and possibly upping my supplement, but I really need to get my asthma under control first :( If you use your Ventolin more than 4x a week, then your asthma is out of control, and I'm using mine more than 4x a DAY at this point. So I think I'm beyond a magnesium fix at this point lol But definitely something I'll note for the future though! Thanks :)

Lisaau
November 25th, 2012, 12:08 AM
the body has trouble absorbing magnesium you need to take it with calcium..............calcium helps the body absorb it.....Lisa you need to see a dr for that

Musical_Starling
November 25th, 2012, 12:12 AM
the body has trouble absorbing magnesium you need to take it with calcium..............calcium helps the body absorb it.....Lisa you need to see a dr for that

Good thing I have my vitamin bottle near me lol I'm taking 300mg of calcium too. It's a pretty good multivitamin, One A Day Weight Smart, and it includes just about everything. I've been tested for a bunch of deficiencies, but the only one that came back was B12 so I've been taking injections for that one. I took one injection a week for a month and have my first monthly due in about two weeks :) I will mention the magnesium though, just in case he didn't check that one.

grannyann
November 25th, 2012, 12:16 AM
Been there and understand what your going through.
Along with the prednisone you may need an anti biotic for a couple of weeks. And I have my own nebuliser machine at home for when my inhaler isn't enough.
and I have been on singular for a few years now which I take at night.And if I were you I would wear a mask when you go out side because any small thing in the air can set you off especially the cold.There may be something in your home that is setting it off also. But I sure hope you get better soon .

pcbatiks
November 25th, 2012, 12:20 AM
Dee.........sorry to hear you're having such a rough time. I don't have any helpful info but I'll be praying for you.

Musical_Starling
November 25th, 2012, 12:22 AM
Been there and understand what your going through.
Along with the prednisone you may need an anti biotic for a couple of weeks. And I have my own nebuliser machine at home for when my inhaler isn't enough.
and I have been on singular for a few years now which I take at night.And if I were you I would wear a mask when you go out side because any small thing in the air can set you off especially the cold.There may be something in your home that is setting it off also. But I sure hope you get better soon .

I did take Biaxin for a couple of weeks, caught pneumonia just after I was in the hospital. My luck, right? lol I also didn't realize that you could get a nebulizer for home use until a couple of nights ago, so this is something I'll be asking my GP about for sure! Two of my triggers (that I know for sure) are heat and humidity. Cold doesn't seem to bother me, it actually seems to open my lungs up a little better if anything. I've had an allergy test done too, and nothing :( Being around cigarette smoke chokes me up, but it does that to a healthy person so I'm not sure that counts lol Even a lukewarm shower chokes me up, and if DH takes one of his "hot" showers where I swear he uses ALL hot water, I have to avoid the bathroom for a good hour while it cools down in there!

Musical_Starling
November 25th, 2012, 12:22 AM
Dee.........sorry to hear you're having such a rough time. I don't have any helpful info but I'll be praying for you.

Thanks Honey :) I really appreciate it!

auntiemern
November 25th, 2012, 12:31 AM
To begin with, let me say this advice is given with love. To start off, you should not be laying around in bed because you are having trouble breathing. Your lungs NEED excercise, even if it is hard. Use it or lose it, is how that works. Walk, catch your breath, and walk some more. I know what I am talking about because I too suffer from lung disease. I have COPD, (chronic, obtructive pulmonary disease), which mine presents mainly as chronic bronchitis. I also have pulmonary fibrosis. My mother had severe emphysema. Was on oxygen for 11 years til the day she passed. She was told years ago she could improve her lung function if she used them, and they would only get worse the less she did. 1/4 of my right lung has pulmonary fibrosis. Most people die within 5 years of being diagnosed. I found out over 10 yrs ago. Get off your woe is me pity party, and get pro active in getting yourself better. (remember, being said with love). Walk up the stairs, even if you have to stop several times to catch your breath. The more you do, the easier it will get. It seems to me like your 'puffers' aren't working. Talk to your doc about trying Advair and or Spireva. And have a rescue inhaler on hand at all times. If your weight is affecting your ability to breath, then try to get rid of some of it. I know that is easier said than done as well. You may also want to have your heart checked, because congestive heart failure, (retention of fluid around your heart) can also cause these symptoms. You may need to be on a fluid expulsion, or water pill. This can also cause elevation in your blood pressure. Symptomatically to me it sounds more like COPD, emphysema, more than asthma. Your age has nothing to do with having these type of medical problems. They can affect people of any age. Get in your sewing room, or wherever you sew, and just do it. It may be hard, but your aren't helping yourself by doing nothing. Also not disrespecting others advice, but magnesium is NOT going to cure what you have. Now get off your butt, and do something to help yourself. Baby steps to start, but in no time you will feel a significant difference. Hugs and love.

lilmouse
November 25th, 2012, 12:41 AM
I have to agree with Marilyn....the old maxim..use it or lose it is very true....Advair is also a good asthma medicine...and get a home nebulizer.....that will help alot! Good luck and will keep you in my prayers. I also have suffered from asthma and have been on some of these drugs....and had a home nebulizer!

Lisaau
November 25th, 2012, 12:47 AM
Marilyn no one said anything about curing asthma l was relaying how it's helped my asthma and l dont know what is with me sweetheart about every single time l post sometihng you seem to think youve got the right to jump on me and attack it and discredit what l said ."l love ya",,,,,,,,,but please "RESPECT" my right to say what l feel and it might help someone else .....

Also if l say anything about what l'm doing as regards to my treatment with my health problems you POUNCE!!! on what l say immediately l've not said anything before now but just bitten my lip and kept my mouth shut. Because l love MSQC !!! and everyone who on here and yes that does include you. I dont want to cause a problem and l apologise to musical starling for this being posted under your thread honey........ but l think this time l cant keep my mouth shut ...I was merely trying to give musical starling an insight
into something that might help.........

So all l'm asking is please respect my right to try and help another person and also pelase RESPECT !! my right to conduct my treatments for my health and my body as l see fit without being jumped on. Even if you disagree with it

auntiemern
November 25th, 2012, 01:08 AM
Sorry that I have offended you. In regards to 'pouncing' on you I don't see it that way. I just happen to disagree with your choice of medical treatment for your back problems, ie: Chiropracty. From being on this side of severe back issues of my own, and DD has degenerative disk disorder, and is in sever pain quite frequently with her back. You may have all the faith in the world in your Chiropractor, but in my OPINION they are not qualified to treat severe spinal deformities or have the medical degree that an MD or Orthopedic doctor does. You can get Chiropractic certification in 2 years, and have no real medical training. My daughter goes to Chiropractor occasionally for adjustments, but when it comes to "real" medical needs she has a doctor that specializes in spines. I do not mean to make you feel like I am jumping on you, was just trying to tell you that I thought you needed the help of an actual doctor, that specializes in your specific type of back problems, and not just a chiropractor.
Marilyn no one said anything about curing asthma l was relaying how it's helped my asthma and l dont know what is with me sweetheart about every single time l post sometihng you seem to think youve got the right to jump on me and attack it and discredit what l said ."l love ya",,,,,,,,,but please "RESPECT" my right to say what l feel and it might help someone else .....

Also if l say anything about what l'm doing as regards to my treatment with my health problems you POUNCE!!! on what l say immediately l've not said anything before now but just bitten my lip and kept my mouth shut. Because l love MSQC !!! and everyone who on here and yes that does include you. I dont want to cause a problem and l apologise to musical starling for this being posted under your thread honey........ but l think this time l cant keep my mouth shut ...I was merely trying to give musical starling an insight
into something that might help.........

So all l'm asking is please respect my right to try and help another person and also pelase RESPECT !! my right to conduct my treatments for my health and my body as l see fit without being jumped on. Even if you disagree with it

Musical_Starling
November 25th, 2012, 01:16 AM
To begin with, let me say this advice is given with love. To start off, you should not be laying around in bed because you are having trouble breathing. Your lungs NEED excercise, even if it is hard. Use it or lose it, is how that works. Walk, catch your breath, and walk some more. I know what I am talking about because I too suffer from lung disease. I have COPD, (chronic, obtructive pulmonary disease), which mine presents mainly as chronic bronchitis. I also have pulmonary fibrosis. My mother had severe emphysema. Was on oxygen for 11 years til the day she passed. She was told years ago she could improve her lung function if she used them, and they would only get worse the less she did. 1/4 of my right lung has pulmonary fibrosis. Most people die within 5 years of being diagnosed. I found out over 10 yrs ago. Get off your woe is me pity party, and get pro active in getting yourself better. (remember, being said with love). Walk up the stairs, even if you have to stop several times to catch your breath. The more you do, the easier it will get. It seems to me like your 'puffers' aren't working. Talk to your doc about trying Advair and or Spireva. And have a rescue inhaler on hand at all times. If your weight is affecting your ability to breath, then try to get rid of some of it. I know that is easier said than done as well. You may also want to have your heart checked, because congestive heart failure, (retention of fluid around your heart) can also cause these symptoms. You may need to be on a fluid expulsion, or water pill. This can also cause elevation in your blood pressure. Symptomatically to me it sounds more like COPD, emphysema, more than asthma. Your age has nothing to do with having these type of medical problems. They can affect people of any age. Get in your sewing room, or wherever you sew, and just do it. It may be hard, but your aren't helping yourself by doing nothing. Also not disrespecting others advice, but magnesium is NOT going to cure what you have. Now get off your butt, and do something to help yourself. Baby steps to start, but in no time you will feel a significant difference. Hugs and love.

I know I need to be more active, but at this point it's so out of control that I'm very limited. I get up and my heart races, I get dizzy and I'm seeing spots. It's not a pulmonary embolism, I've had CT scans and lung X-rays, it's just my body's reaction to airway restriction. I will say though, I haven't been THIS bad the whole time (since August), I've just gotten a lot worse since switching from the Flovent to Alvesco (and I switched back today because enough is enough!)

Right now my main issue is the medications aren't doing what they should, and I have an appointment with my doctor on Friday. I'm hoping that he'll give me a prescription for Advair, as it's the combo equivalent to Flovent, which has done the best for me so far. I've had chest x-rays, CT scans (cat scans) and EKG's done and my heart checks out well, it's just this bloody asthma (that nobody wants to call asthma lol) I was also on HCTZ (hydrochlorothiazide) for three years for edema in my ankles and it turned out that the ankle swelling was temporary but became exascerbated due to the HCTZ. I haven't taken it in over a year and I've lost 35 pounds so far and haven't had swelling in about 8 months.

And about the magnesium, I don't expect it to CURE my asthma, but if there's a snowball's chance in h*ll it might help then I'll try it. Different vitamin/mineral deficiencies can cause any number of health issues, so I take a daily multivitamin to try and keep myself fairly balanced. However some vitamins, like B12, I'm not able to absorb through diet, so I have to take a monthly injection for that one.

I am trying to get up and do more, but I've had a hellish week with this Alvesco and I'm really hoping that this Flovent will kick back in and I'll be able to get back to my "asthma" normal at least :D

Musical_Starling
November 25th, 2012, 01:23 AM
I have to agree with Marilyn....the old maxim..use it or lose it is very true....Advair is also a good asthma medicine...and get a home nebulizer.....that will help alot! Good luck and will keep you in my prayers. I also have suffered from asthma and have been on some of these drugs....and had a home nebulizer!

Thank you :) I'm really hoping that Advair might do the trick for me, I'm just so desperate at this point that I'll try anything! lol And I'm going to ask about a home nebulizer for sure, because that helped more than the Ventolin when I was in the hospital.

meemeecyn
November 25th, 2012, 01:55 AM
Dee, so sorry to hear you are feeling lousy. I'm a retired nurse, but worked in public health, not med-surg so by no means know all that much about asthma. But I am wondering if you have seen a pulmonologist? You may have said in an earlier post that I could have missed. They specialize in lung stuff and could give you a diagnosis as well as the latest treatment. there are also support groups around which have been very helpful for some who struggle with this awful disease. It sounds like you have had some work up (i.e Xrays) to rule out embolism, pneumonia, TB, congestive heart failure, etc but am also wondering if they have a clue of what might be causing the attacks (specifically allergens that you could avoid if you knew what they were). My DD sees an allergist and she has been amazingly helpful and informative with tools for living with these allergies (some of them so unusual.....but definitely affect her asthma) It sounds like you have been through the wringer with this whole process! No wonder you are discouraged and frustrated. Vent here anytime. Take care and we all hope that you get some answers so that you are feeling better soon.
Cynthia

HandsOffItsMine
November 25th, 2012, 02:00 AM
(((Dee))), I don't have asthma but have been on the medical "we don't know what the h*ll to do with you" nightmare. lol

Have to agree with the Use it or Lose it bit though, soooo the minute you can get over the dizzy spells...you need to take the steps and DO IT! Yes, I'm yelling! hehe Heck I have to yell at myself sometimes. :D

Will keep you in my prayers that you get the right meds and the nubi at home. We had that for Kat when she was young, really made a difference to have it in the house versus having to make the run to the ER in the middle of the night.

Huggers, Ruby

Musical_Starling
November 25th, 2012, 02:09 AM
Dee, so sorry to hear you are feeling lousy. I'm a retired nurse, but worked in public health, not med-surg so by no means know all that much about asthma. But I am wondering if you have seen a pulmonologist? You may have said in an earlier post that I could have missed. They specialize in lung stuff and could give you a diagnosis as well as the latest treatment. there are also support groups around which have been very helpful for some who struggle with this awful disease. It sounds like you have had some work up (i.e Xrays) to rule out embolism, pneumonia, TB, congestive heart failure, etc but am also wondering if they have a clue of what might be causing the attacks (specifically allergens that you could avoid if you knew what they were). My DD sees an allergist and she has been amazingly helpful and informative with tools for living with these allergies (some of them so unusual.....but definitely affect her asthma) It sounds like you have been through the wringer with this whole process! No wonder you are discouraged and frustrated. Vent here anytime. Take care and we all hope that you get some answers so that you are feeling better soon.
Cynthia

Thanks Cynthia :) I've seen a respirologist, not sure if that's related to a pulmonologist? I actually have to see him again, but not sure when. I also have a full pulmonary function test scheduled for February. I've had X-rays, CT scans, EKGs, blood work, you name it I think i've done it lol I've also seen an allergist, and no allergies to be found according to the scratch test. Very, VERY frustrating to say the least. I try to keep a smile on my face, but this week has really tried my patience and has pushed me to my limit because I was seeing a little improvement and it almost feels like I'm back to square one :( Thanks for letting me vent though, it really helps with the stress side of it at least :D

Musical_Starling
November 25th, 2012, 02:16 AM
(((Dee))), I don't have asthma but have been on the medical "we don't know what the h*ll to do with you" nightmare. lol

Have to agree with the Use it or Lose it bit though, soooo the minute you can get over the dizzy spells...you need to take the steps and DO IT! Yes, I'm yelling! hehe Heck I have to yell at myself sometimes. :D

Will keep you in my prayers that you get the right meds and the nubi at home. We had that for Kat when she was young, really made a difference to have it in the house versus having to make the run to the ER in the middle of the night.

Huggers, Ruby

The worst response to "what's causing my health issues?" is "We don't know." I keep telling DH that I would take ANY diagnosis at this point, no matter what, because at least I'd know what in the heck it is and then we'd know where to go from here! I keep calling it asthma, because it's leaning toward that so far, but all they're calling it is "reactive airway disorder". Medical mumbo-jumbo covering their butts is more like it lol I just can't wait to be able to "use it" again, because not only am I getting cabin fever, I've built up awesome calves over the years and I don't want them to atrophy! lol And it's okay to yell, because I'm not able to yell at myself without wheezing so someone has to do it :icon_giggle:

Thanks for the prayers Ruby (and everyone) because I really think I need that little extra boost to help me this time. I've been saying prayers, and my mom and MIL have as well, but three little voices can sometimes get lost amongst the millions so every little bit helps :)

lilmouse
November 25th, 2012, 02:52 AM
Of course will keep you in prayer...should have said so in earlier post....sending you a cyber hug also!

RiverMomm
November 25th, 2012, 02:52 AM
Oh, Dee, I am so sorry you are so sick. I have terrible allergies and asthma so I can truly say I know how you are feeling.

First, let me say-DON'T push yourself during an active asthma time. In your case, this has been months. As frustrating as it is not to be able to do the things you normally do, remember that asthma can kill you. So, when your body says stop- well, stop! It's like your body is running a marathon underwater every day. Your body is stressed, right along with your lungs.

Second, understand that asthma is an over reaction to an allergen. There can be so many in your environment that you may not be able to single it down. So, start by having a "clean" room where you sleep and where you spend most of your time during the day (if possible). You will need to remove dusty, dander stuff (yep, say goodbye to the down pillows unless you get special covers for them), have hubby vacuum the heck out of the bedroom and shut the windows and door. Wash bedding in hot water. Get a very good air cleaner with a good hepa filter. Turn it on at least an hour before you go to bed and run it all night (I keep my running all day and night). Do not open your windows at all, even when you are not in the room during the day. This clean room will give your lungs a little less stress and give them some time to heal.

And finally, call your doctor again and tell him that your quality of life is terrible. There are a lot of meds on the market and sometimes you just have to try them all and then try them again. A low dose antibiotic for a while may help. Most people with asthma have inflamed parts of their lungs. The most important thing you can do is let your doctor know how bad it is-tell him over and over.

When you did your allergy test, did you take any type of decongestant or allergy medicine any time before the test? Be sure and tell the doctor when doing tests what you are taking including vitamins (I had a very important cancer test not work because of my vitamins once).

Avoid what you know sets your off (steam and heat) and go to the stuff that helps (cold). Open the freezer and stick your head in to breath in and out for a little while if you have to. Just tell hubby you are thinking of what is going to be for dinner! LOL

Give yourself a hug and do your best. This will get under control, it just will take time and trial and error.

Musical_Starling
November 25th, 2012, 03:25 AM
Of course will keep you in prayer...should have said so in earlier post....sending you a cyber hug also!

Thank you! :)


Oh, Dee, I am so sorry you are so sick. I have terrible allergies and asthma so I can truly say I know how you are feeling.

First, let me say-DON'T push yourself during an active asthma time. In your case, this has been months. As frustrating as it is not to be able to do the things you normally do, remember that asthma can kill you. So, when your body says stop- well, stop! It's like your body is running a marathon underwater every day. Your body is stressed, right along with your lungs.

Second, understand that asthma is an over reaction to an allergen. There can be so many in your environment that you may not be able to single it down. So, start by having a "clean" room where you sleep and where you spend most of your time during the day (if possible). You will need to remove dusty, dander stuff (yep, say goodbye to the down pillows unless you get special covers for them), have hubby vacuum the heck out of the bedroom and shut the windows and door. Wash bedding in hot water. Get a very good air cleaner with a good hepa filter. Turn it on at least an hour before you go to bed and run it all night (I keep my running all day and night). Do not open your windows at all, even when you are not in the room during the day. This clean room will give your lungs a little less stress and give them some time to heal.

And finally, call your doctor again and tell him that your quality of live is terrible. There are a lot of meds on the market and sometimes you just have to try them all and then try them again. A low dose antibiotic for a while may help. Most people with asthma have inflamed parts of their lungs. The most important thing you can do is let your doctor know how bad it is-tell him over and over.

When you did your allergy test, did you take any type of decongestant or allergy medicine any time before the test? Be sure and tell the doctor when doing tests what you are taking including vitamins (I had a very important cancer test not work because of my vitamins once).

Avoid what you know sets your off (steam and heat) and go to the stuff that helps (cold). Open the freezer and stick your head in to breath in and out for a little while if you have to. Just tell hubby you are thinking of what is going to be for dinner! LOL

Give yourself a hug and do your best. This will get under control, it just will take time and trial and error.

Thanks Vicky :) Don't worry, "The Giant" won't let me too much. He's a real protective mother-hen, even when I'm too hard-headed and try to fight him on it lol And I bought him a steam mop for Christmas so we could get rid of chemicals on our floors and a portable steamer for getting rid of germs and dust and dirt everywhere else, and he's already been using it to clean the place from top to bottom lol As soon as it arrived, I wanted to keep it for him to open on Christmas, and he refused because he said "No, this is going to help me keep the house clean and germ free for you, so I'm using it now!" I think he just wanted to play with it :icon_razz:

I've also been keeping an eye on my heart rate. I downloaded a heart-rate monitor on my phone (I know it's not 100% accurate, but it can give me a rough idea) and I've been checking it on a regular basis to see how different activities and different medications have been affecting me and that's been keeping me from doing too much as well. I just want to be able to do all of the things that my brain thinks I can, but when my lungs say no then I have no other choice but to oblige :)

I thought my room (and the rest of the house for that matter) was pretty clean (especially since hubs has been steaming the heck out of everything lol) but I see that I haven't been vigilant enough lol I did get rid of the feather pillows though! Tossed them out about a month ago and got hypoallergenic ones that have some sort of gel microfibre stuffing. Not sure what it's called, but they cost a small fortune! But I haven't washed my sheets in hot water, and I've had my window open 24/7. Actually, I should explain that. I have a portable A/C unit (that hooks up to the window through a hose) and the original unit had two hoses, but the new unit only has one exhaust hose. So the other hole wasn't needed and I covered it (mostly) with duct tape. Oops. I am soon taking the AC out though, so that will solve that problem. We have casement windows (crank) and I have to call the window shop to get a guy come in and put our actual "glass" pane in. Right now it's some plastic/fiberglass pane with two holes cut in it for the hoses. I also didn't think about any filtration machine, even though I used to sell them at The Source. Duh. Should have thought of that one. I do live in a new house though (only two years old) and we have an air exchanger and I clean that filter every spring. Maybe that filter should be replaced instead of just cleaned? And pick up a filtration device for the bedroom :)

I'm also seeing my doctor on Friday, and he'll be told in no uncertain terms that something needs to change because this is severely impacting my daily activities. I have to have FREEZING cold showers in order to breathe, and that's certainly not fun! Plus shampoo just doesn't lather as well in cold water :D

I did my allergy test last year, but didn't have these breathing problems at the time. I didn't take any allergy/cough medications before the test because I was given strict instructions not to. I don't remember what I was tested for, the only one he emphasized was cats because I have two but I didn't react to any of the scratches so no cat allergy.

It's funny that you mention sticking my head in the freezer, because I worked at Subway one summer and on really hot days I'd spend most of my time in the freezer, prepping veggies lol Everyone would wonder where I ran off to, couldn't find me, and I'd be in the freezer chopping away! I wish I had a walk in freezer, just so I could feel that relief again! And I inadvertently discovered that onions don't make you cry when they're frozen! lol

Oh goodness, I certainly rambled off again that time, didn't I? Well, getting all of this off my chest (if only it could be literally!) is really helping :) I've had a frustrating few days, and had a really rough day yesterday (hence throwing out the Alvesco this morning!) so it's nice to find a little humour in the situation.

So, I guess I need to get started on that honey-do list for tomorrow :D Wash sheets, clean room top to bottom, check prices on hepa filters, call window-switcher guy, massage my feet, cook me supper... lol Maybe I should omit those last two, that may be a little too much :icon_giggle:

Silverlining
November 25th, 2012, 03:32 AM
Dee, I sounds like you have been through a lot. I believe that a respirologist is close to a "pulmonologist" here in the US.
What I can advise is this: If your respirologist is not helping you change doctors.
And, magnesium is great for respiratory illness. That is exactly what they give in the ER for asthma. So I would definitely consult your doctor about taking it daily with food.
I do believe in chiropractors. I did not use to but I do now. I have seen chronic pain specialist and the chiropractor helps me the most. Yes, there is some truth to the fact that sitting around all the time is not good for any of us; however, that being said:
when you can't breath to walk then only do what you can. Don't push it when it is really bad. Yes nebulizers from the machine are very effective.
I only say these things because I am a Registered Repiratory Therapist and have worked in the ER and ICU.
I really hope that you get to feeling better. Again, if the doctor is not helping you, change doctors. Take care.

MayinJerset
November 25th, 2012, 03:34 AM
Dee, I'm floored by the number of health problems you are dealing as well as keeping track of meds, reactions, etc. I have no experience with asthma but I do have experience with praying which I'm doing for you with the hopes that a big change for the better happens soon. May in Jersey

bkthomas
November 25th, 2012, 03:58 AM
Dee, you're in my prayers always.........

Musical_Starling
November 25th, 2012, 04:16 AM
Dee, I sounds like you have been through a lot. I believe that a respirologist is close to a "pulmonologist" here in the US.
What I can advise is this: If your respirologist is not helping you change doctors.
And, magnesium is great for respiratory illness. That is exactly what they give in the ER for asthma. So I would definitely consult your doctor about taking it daily with food.
I do believe in chiropractors. I did not use to but I do now. I have seen chronic pain specialist and the chiropractor helps me the most. Yes, there is some truth to the fact that sitting around all the time is not good for any of us; however, that being said:
when you can't breath to walk then only do what you can. Don't push it when it is really bad. Yes nebulizers from the machine are very effective.
I only say these things because I am a Registered Repiratory Therapist and have worked in the ER and ICU.
I really hope that you get to feeling better. Again, if the doctor is not helping you, change doctors. Take care.

My respirologist hasn't been helpful so far, but he's also been on vacation for the past month :icon_angry: But my GP put in another request to see him last week, so hopefully I see him soon. I see my GP again on Friday, and he's been great. Treating me like a bit of a guinea pig, but great lol He's also very new and came into the picture shortly after my ER trip back in August. I ended up in the ER because my GP at the time didn't believe I needed any medications or a pulmonary function test. Thought my breathing issues were due to my weight. Considering I have family members who outweigh me by 100+ pounds that DON'T have these issues, I don't think that's my problem lol I'm sure any extra weight doesn't help, but I know there's more to it than that. I'm definitely mentioning the magnesium. I'm all for anything natural that might help :) Even if magnesium doesn't help my asthma (or whatever in the heck it is), maybe it'll help something else. It certainly can't hurt, so why not? I've been pushing myself a little, but I've quickly been learning my limits. I've also taught DH how to administer my Ventolin using the chamber just in case. Thankfully it's never come to that, and I hope it never does :) When I get a nebulizer, I'll be teaching him how to use that one as well.

Musical_Starling
November 25th, 2012, 04:18 AM
Dee, I'm floored by the number of health problems you are dealing as well as keeping track of meds, reactions, etc. I have no experience with asthma but I do have experience with praying which I'm doing for you with the hopes that a big change for the better happens soon. May in Jersey

I have a little notebook that stays on my bedside table and I use it to keep track of whatever I've taken that day, what doses, and how I've felt. I've also used my phone to keep track of my heart rate and have added little notes to help me understand what caused my heart to beat at that rate. It's a great help to keep notes, no matter what illness you're trying to get a handle on. Without my notes I'd probably be up the proverbial creek lol And thanks for your prayers May, they're certainly appreciated :)

Musical_Starling
November 25th, 2012, 04:19 AM
Dee, you're in my prayers always.........

Thank you Kathy :icon_hug:

dizzyLiz
November 25th, 2012, 10:24 AM
Dee,
I don't often talk about this, but if anything from my experience will help you, i will be glad to share.

I have had a history of bronchitis my entire life. Usually happens when the seasons change. A antibiotic, prednisone, and a inhaler would take care of it. Well three years ago I had lymes disease. It was discovered within 5 weeks of my being bitten. I never even knew I had been biten by a tick. My GP simply tested for anything that related to my symptoms and I tested positive for lymes. The sooner it is discovered the better. I had to take doxycycline for 3 months. For months afterward I would have times that it would attack my joints: example, I would wake and could not move my right arm. The pain would be horrible for a week, then simply go away.

About six months after being bitten I developed full blown asthma. Went through several doctors, finally found a pulmonoligist. He tested my lung function, checked for embolism, tons of blood work, basically every test available. I have severe allergic asthma. A person with seasonal allergies will have a IGE rate of 100. Mine was 6400. 64 times the normal elevated rate.My doctor said this is the highest he has seen in his career, and he is not a young man. Naturally this effects my breathing, but it also effects my joints. At times the pain is unbearable. But there is light at the end of the tunnel. Xolair, it is 3 injections I take every two weeks. The way it works is it binds the antigens together that my body reacts to. I have to get these at a infusion center. Six months after starting they checked my IGE and it was down to 985; ten times the normal is better then 64 times.
My daily meds are as follows:
Nebulizer: albuterol, pulmicort, perforomist
Pills; singulair, zyrtec, spiriva

I carry a ventolin inhaler and epi pen with me at all times. And I take the same nebulizer solutions at night.
I rarely have to use my rescue inhaler. Honestly when I feel tight in my chest I simply take my nebulizer to work with me.I even hav a adapter so I can use my nebulizer in the car ( in case the power goes out) These times are rare. The Xolair injection completely changed my quality of life. I went from constantly being on antibiotics and prednisone, to rarely having to use them. With my breathing issues controlled, I wish they could help with the pain. a IGE rate this high effects your entire body. Basically my entire body is enflamed. The way my doctor explained is, as i simply live my life my body is constantly bombarded as I'm allergic to most everything. Spring through Fall is the worst. South Carolina has a long growing season, warm weather is by far the worst time.
I must add that through all of this i only missed 4 days of work. I simply cannot lose my insurance, so I always go to work.

Please find another doctor. Keep looking and you will find someone to help.

Monique
November 25th, 2012, 12:06 PM
Dee I wish I had words of wisdom to offer or any advice, but alas I do not. I hope they soon discover "What's wrong" and find a course of action to take. Prayers being said for you, my dear. Keep us posted.

Claire Hallman
November 25th, 2012, 12:43 PM
I know nothing about asthma but when you mentioned that you lived in an almost new house something occurred to me.
Is there Chinese dry wall in your house??? That can cause serious problems. It might take a hole in the wall to find out but might be worth that if it is your problem.

Musical_Starling
November 26th, 2012, 05:44 AM
Dee,
I don't often talk about this, but if anything from my experience will help you, i will be glad to share.

I have had a history of bronchitis my entire life. Usually happens when the seasons change. A antibiotic, prednisone, and a inhaler would take care of it. Well three years ago I had lymes disease. It was discovered within 5 weeks of my being bitten. I never even knew I had been biten by a tick. My GP simply tested for anything that related to my symptoms and I tested positive for lymes. The sooner it is discovered the better. I had to take doxycycline for 3 months. For months afterward I would have times that it would attack my joints: example, I would wake and could not move my right arm. The pain would be horrible for a week, then simply go away.

About six months after being bitten I developed full blown asthma. Went through several doctors, finally found a pulmonoligist. He tested my lung function, checked for embolism, tons of blood work, basically every test available. I have severe allergic asthma. A person with seasonal allergies will have a IGE rate of 100. Mine was 6400. 64 times the normal elevated rate.My doctor said this is the highest he has seen in his career, and he is not a young man. Naturally this effects my breathing, but it also effects my joints. At times the pain is unbearable. But there is light at the end of the tunnel. Xolair, it is 3 injections I take every two weeks. The way it works is it binds the antigens together that my body reacts to. I have to get these at a infusion center. Six months after starting they checked my IGE and it was down to 985; ten times the normal is better then 64 times.
My daily meds are as follows:
Nebulizer: albuterol, pulmicort, perforomist
Pills; singulair, zyrtec, spiriva

I carry a ventolin inhaler and epi pen with me at all times. And I take the same nebulizer solutions at night.
I rarely have to use my rescue inhaler. Honestly when I feel tight in my chest I simply take my nebulizer to work with me.I even hav a adapter so I can use my nebulizer in the car ( in case the power goes out) These times are rare. The Xolair injection completely changed my quality of life. I went from constantly being on antibiotics and prednisone, to rarely having to use them. With my breathing issues controlled, I wish they could help with the pain. a IGE rate this high effects your entire body. Basically my entire body is enflamed. The way my doctor explained is, as i simply live my life my body is constantly bombarded as I'm allergic to most everything. Spring through Fall is the worst. South Carolina has a long growing season, warm weather is by far the worst time.
I must add that through all of this i only missed 4 days of work. I simply cannot lose my insurance, so I always go to work.

Please find another doctor. Keep looking and you will find someone to help.

I've never had any first-hand experience with Lyme, but from what I've heard (and obviously after reading your post) it's absolutely horrible! I do know that Lyme is very, VERY rare here on the island, but there have been a few cases of it. I don't have any joint pain or anything though, other than my left knee when I run (or in this case RAN lol), but that's due to Osgood-Schlatter (any moms of athletic boys may have heard of this, I'm one of the rare female cases lol). I have intermittent back pain as well, but again it's mixture of a uterus that hates me and oversized "melons" lol So no real pain that I can't deal with and haven't gotten used to :) Had it all checked out, and it's just "normal" pains.

I will ask my doctor about IGE numbers though. He may have checked this already and got a "normal" result so didn't mention it, but just in case he hasn't checked it then I'll make sure he does :) My family doctor thankfully is good, just a little "new" sometimes lol But he explains things really well, and he doesn't hesitate to send me for testing or try another drug if I feel like one isn't working. It's just a matter of finding my "personal cocktail" and sticking to it. He's certainly the best I've seen, and I've had three family doctors in three years. My respirologist on the other hand... I'm TOLD he's the best in the province... I don't want to see the worst lol

And I'll be saying an extra prayer for you Liz honey, because you certainly sound like you could use one :) Thanks for telling me your story


Dee I wish I had words of wisdom to offer or any advice, but alas I do not. I hope they soon discover "What's wrong" and find a course of action to take. Prayers being said for you, my dear. Keep us posted.

Thank you Monique honey :)


I know nothing about asthma but when you mentioned that you lived in an almost new house something occurred to me.
Is there Chinese dry wall in your house??? That can cause serious problems. It might take a hole in the wall to find out but might be worth that if it is your problem.

I don't think there's any Chinese dry wall. I had never heard of it, so of course I Googled it lol I think that may have been a southern US thing, and I think they started cracking down on it in 2007 (from what I read at least) so I THINK I'm safe as my house was still being finished this time two years ago. It was completed in January of 2011 and we moved in the next month. There is some exposed drywall in the basement though (it's an unfinished basement) so I will get DH to check and see if there's any writing on it to indicate where it was made :) Thanks Claire!



If I keep writing these super-long posts Al is going to smack me! lol