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Posted 10/15/2007 9:08 PM (GMT -8)
 have been in and out of the doctor's office so many times this year. I have had one bout of tonsilitis, 2 bouts of bronchitis, and 1 bout of pneumonia, not to mention the common colds I get once a month. I've been going through so many med changes, it's ridiculous. I've been living with asthma since I was 13 (I'm currently 21). It wasn't that bad at 13. I found out that i had it because I wasn't breathing well and my mom got worried. Then I found out that I was allergic to almost everything environmental and all animals. It stinks because I'm such an animal lover. I admit... as a teenager, I didn't care to use my medications I was prescribed. I had seen allergy specialists and everything. For years I was on allergy shots two times a week. Those didn't seem to help so I stopped them. I just thought that for me, not being able to breathe was going to be a norm. But I had to quit playing basketball and volleyball during my jr. year in highschool. I couldn't breathe even after taking my inhaler before, during and after games and practices. I had to quit. It's just getting harder and harder for me to breathe. I had my baby in Jan. 2006. As I was pregnant, I had a hard time breathing and was light headed a lot. the baby was pushing on my lungs and I was taking my inhaler at least three times a day... which still didn't give me much relief. My mom has constantly been on me because of how bad I breathe. I have had two severe asthma attacks where I was going to die if I didn't get my inhaler NOW!!! but no hospitalizations, no ER trips. I can't tell if it's just me being hard headed about going in because I am in a constant state of of it being hard for me to breathe.

I take singular, which has proven to work best for me. I have previously tried Allegra, Zyrtec, and Claritin. I also take Naprosen to help control the pain in my lungs from breathing. The sharp pain hurts so badly, but the tightening hurts too. I have tried flovent, advair, pulmicort, xopenex and something else, I do believe. The advair worked best for me, not totally, but better. The only thing was that I was having severe tremors to the point that I couldn't write or hold a cup without it spilling and that was on the lowest dose. I was switched to Symbicort and my asthma is still really bad. It doens't help much at all. I am constantly gasping for breath. My head is so lightheaded. I find it hard to concentrate in school ((I'm in college) and I can't walk for any distance without breathing like I had just ran a mile. I can't talk without taking deep breaths every few seconds. I can't take deep enough breaths to even FILL my lungs with air. I have maybe one or two breaths in a week where I am like, "WOW! that was a nice breath of air!" I wake up constantly at night wheezing. I am so tired all day long. My body aches and I am getting weak. (it's hard for me to open a soda) I have this constant feeling of phlem in my throat and sometimes it takes me many swallows to clear my airway enough to breathe. The headaches can be hard to deal with. I don't have a chronic cough at all. I rarely cough, as a matter of fact. My doctor has been working well with me in trying to control my asthma. I have an appointment with her later this week to find another med that might work for me. I'm at wits end here and I need some relief.

I HATE taking my fast-acting inhaler. I probably don't take it as much as I should. I normally ignore my symptoms as long as possible until my mom or somebody asks me why I am breathing so hard and fast. (I'm so hard-headed). But as far as I know, my regular meds should be controlling my asthma, but they aren't.

what else can I do? What can I suggest to the doctor? What do I need to help me breathe better? I know that I don't have severe asthma attacks regularly, but sometimes I wonder if I just don't realize how bad it is??? I started to get really worried about it when my doctor told me that if we couldn't get my asthma under control, it could be shortening my life-span. I just want to breathe. I can't even run like I used to... let alone walk!!!

-Sarah
Posted 10/15/2007 9:40 PM (GMT -8)

O.K., Ms. Sarah, It sounds like something is going to have to change or you are headed for serious trouble.  I am 56 years old and have severe asthma and I can be a little hard headed at times also.  You have a daughter now to take care of and you are also trying to go to school.  You just can't wait until it is almost past time to take care of your asthma situation.  One of these days you may not get that second chance.  Asthma is a very serious disease.

Do you have a nebulizer?  They make the little portable ones now that you can also use in your car.  As severe as my asthma is, inhalers don't do much for me.  These small nebulizers only cost around a $100.  Also, if your asthma is not being controlled by all the other medications you are on, you may want to ask your doctor about Xolair.  It is an injection you take monthly.  It does cost about $10,000 a year, so hopefully you have insurance.  I pay $15 to the drug company that ships the medication to my doctor's office and then I pay my regular co-pay for my office visit.  I have been taking it for about four years.  As severe as my asthma is, I have never spent a night in the hospital and I have only had one ER visit.  That's why the insurance companies are willing to pay for it.  It's much less expensive than having asthma patients show up in ER's or spend time in the hospital.  You may want to do a little research yourself on Xolair and then ask your doctor about it.  Do you see an allergist or a pulmonologist?  I don't think the internists or GP's are really up to speed on Xolair.

Good luck and feel better!

Carla

Posted 10/16/2007 6:45 AM (GMT -8)
another day, you are so right on this one. Sarah you need to wake up and take your meds. You have so much to hold onto now Sarah and your lil one needs you. There are a lot more medications out there that could help you and you need to get one that will work. We are very concerned and hope you'll go to the doctor and talk with him/her. Good luck to you and keep us posted as to how your doing.
Soft hugz.......
Posted 10/16/2007 8:18 AM (GMT -8)

I do take my meds. Every single day. I have been since I was pregnant. I decided that I needed to find someone to help me, or tell my that I'm trippin because I can't even play with my kiddo. And I'm so NOT a lazy person! But lately, when I'm at home, I just want to sit and try to breathe on my chair. It just plain stinks! It's a dull constant pain in between my shoulder blades and a little more on my left side, and also on the front of my chest. If I wasn't taking the naprosen, I know it would be unbearable. When I was a kid, I never got sick, ever. Now I feel like I'm sick all the time.

Carla, I do not have a nebulizer. I don't even have a peak flow meter. I am going to seriously have a talk with my doctor. I have actually not even been proactive in doing some research on this disease that I have, and I should have done this long ago. But now that i am researching, I'm finding out so much more. Maybe I should go to a pulmonologist??? I don't see any specialists. I'll talk with the doc. My appointment is tomorrow.

I noticed that you had GERD, Carla. My kiddo has had a rough time with GERD. To the point that she is on a G-tube and had a reflux surgery. She's been hospitalized 8 times for malnutrition, dehydration. It effected her so horribly that she is developmentally delayed, has hypotonia and is in all therapies. Ever since she had that surgery, though, she has been so much better!

-Sarah

Posted 10/16/2007 6:47 PM (GMT -8)
Glad to hear that you are taking your medications! Very good! Ask your doctor about a referral to an Asthma/Allergy doctor first before going to a pulmonologist. Also, maybe a good Pain Management Doctor for the shoulder, ask about chest x-rays (for the asthma doctor) and a shoulder x-ray and possibly a shoulder MRI (for the pain management doctor). The shoulder pain does not sound to be asthma related, wish I could help more on that! so sorry your still having trouble. Good Luck at the doctor tomorrow, keep us posted as we are still concerned about you! So sorry you've been thru a lot with your daughter, mine had open heart surgery at just 12 days old, it can be scary. I'm glad your daughter is doing better.......
Please keep us posted,
soft gentle hugz to you.......
Posted 10/17/2007 7:36 PM (GMT -8)

Sarah,

I would highly recommend you seeing an allergist.  My allergist treats my asthma.  I had already been seeing her for a number of years for allergies before I got asthma.  I just asked if you were being treated by an allergist or a pulmonologist to try to get a feel for where you were.

You definitely need a nebulizer and you also need a peak flow meter.  You can now get the small nebulizers that you can also use in your car, it comes with an adapter.  I use the Omron which runs around $100.  I bought mine locally, but I found one on-line for another HealingWell member a while back and it was about the same price.  It gives you a real feeling of security to know that you can pull over and take a breathing treatment when you need to.  You also need a peak flow meter.  Most allergists will give you one or they probably cost less than $10.  This is a vital tool to let you know when you are in trouble.

I certainly do not think you are a lazy person.  I think you are not being treated properly for your asthma.  When your breathing isn't right, you have no energy.  Ask your doctor to refer you to an allergist and ask the allergist about Xolair.  It sounds like you could benefit from it.  You have to take care of yourself so you can take care of that sweet little one.  Your asthma is too serious to be treated by a GP or a family doctor.

Please keep us posted.

Prayers for you and the little one,

Carla

Posted 10/18/2007 8:20 AM (GMT -8)

I'm so upset! I just got done typing up a reply and my computer suddenly restarted to update. GGGRRR!!! Lets see if I can cover everything I had before.

I wanted to thank you guys so much. You don't know how much you have helped me! Your responses have given me strength to speak up. I am not very good about describing my symptoms to my doctor because I really don't like to admit that I have a problem. But the fact is that I do. Also, for some strange reason and I don't know how...I just felt that it wasn't that bad? i know I know.... stupid of me, but you guys helped me to realize how much I need some help, so thank you! I was so upset the past few weeks with how hard it was for me to breathe. I finally came clean to the doctor and explained my all symptoms yesterday. She said, "Shame on you. If you don't tell me exactly what is going on, I won't be able to treat you right." Shame on me! She was really shocked with how much I have been coping with such severe asthma. I think she knew it was pretty bad anyways. She told me how close I have been to death (with my discription of my symptoms) and basically told me everything you guys did. That asthma is a very serious disease and can cause death rapidly. Oh man, she scared me, but i guess I needed to know that from someone. I don't want to die. She said that given the severity of my symptoms, I was on her verge of death at any moment. Oh my goodness... I can't believe I let it get this far! She said that all it takes is for me to pass out and not have help around. She's so right!!! I live alone too, well with my 21 month old daughter... so nobody would be here to help me out if I did pass out. my chest was even retracting. At the office visit, my pulse ox was 96, but I felt that I was breathing a little better at the office, so I know it gets way lower!

Here's what she did. She gave me a steroid shot in the butt. OUCH! But it helped... it just made my thoughts go all over the place for a couple of hours. Then she added some new medication. I'm now taking spiriva on top of singulair, symbicort, xopenex and naprosen. She is also putting me on nebulizer treatments. I have a follow up in two weeks. Hopefully soon I will get the nebulizer and medication. I think she added another med into the neb treatments too. I'm not sure, can't remember, but I should remember. I will be sure to call her. she also said that the dull pain in my shoulder area and chest is from my trying to breath. I bring in my shoulders a lot when I am struggling to breath, which is ALL THE TIME! My lungs were "tight" sounding in the office, but clear. I had a chest x-ray a couple of months ago when my pleurissy was diagnosed. It was normal.

So, with all this medication, is it going to jumble my mind? Am I going to be jittery all the time? I guess if I am it would be better for me to breathe right... so i guess I could take the jittery feeling.

Also, when is it the best time for me to take spiriva? I am taking my naprosen and symbicort in the morning when i get up. The xopenex about four times a day, and symbicort, naprosen and singulair at night. I was thinking about taking the spiriva at lunch time? Also, are these drugs ok to take together? I was reading the spiriva information and it didn't say anything about it being dangerous.

Thanks again for all of your words of wisdom and whipping me into shape!

-Sarah

Posted 10/18/2007 9:26 AM (GMT -8)

hi Sara!

Ive read your post, and i know excatcly how you feel, believe me.

I found a way to control it, I practicaly dont have asthma anymore, and I refused to take any medication, I hate them, I have trying since a kid, today I am 24 years old and I can control it 95%.

I made excersices, I have made tests, I have working on it with control, with meditation (not too much of it, after medications I hate them too).

I hate medications, I hate the spray, I hate all of it, any medicine, I discovered that the solution is inside ourselves, trust me. All started when I saw a friend saying bad thing to another friend, and that person started to cry, with out any violence, without any contact at all, then I just realize that the mind can control your body, that what happens in your head can make  a reaction inside you, biologically.

There is a way to make your airways got opened when you need to, there is a way to MAKE your lungs works perfectly.

I Had suffered this for many years when i was a kid, I know the suffering, and I want to share my progress with the everybody, I would love to chat with you, anytime.

edited. 11. No cryptic posts.  Using cryptic messages to "skirt" the rules is not permitted.

kisses !

Post Edited By Moderator (another day) : 10/26/2007 7:32:44 PM (GMT-6)

Posted 10/18/2007 12:12 PM (GMT -8)

I think Sarah's condition is much too serious to try an alternative therapy at this time.  In my opinion, she first needs to get her asthma under control.  As she mentioned, she lives alone with her 21-month old daughter.  She could die and who knows how long her daughter would be left there alone until someone found her.  Maybe you could help her with that later on.

Sarah, it sounds like your doctor is pretty good.  Will you be getting your own nebulizer?  I use Xopenex in my nebulizer because I just could not handle Albuterol.  It made me race too much.  Just take all the medications as prescribed by your doctor.  Unless you just have to, I would try not to use your rescue medications just before going to bed, they can keep you awake.  But, if you need them, it's better to be awake than not breathing.

I'm really proud of you!  Please stay in touch and let us know how you are doing.

Take care!

Carla

Posted 10/18/2007 3:49 PM (GMT -8)
I take Spiriva in the morning with 1 dose of Advair 250. I think I read somewhere that that was the best time for it.

I also take 1 dose of Advair 250 in the evening and have just added Asmanex 2 puffs before bed. I have cough variant asthma that has been a pain to control. My triggers are strong smells, perfumes, smoke of all types and dust. I'm not allergic to anything that the drs have tested for. My tests are all normal but I've been coughing for almost 3 years now. I've stumped 6 doctors so far. I just keep trying new drugs in the hope that it will help.
Posted 10/18/2007 5:36 PM (GMT -8)
Wow Sarah, WooHoo way to go hun! Learning to speak up is hard and you did it! I'm so glad for you. Speaking up at the doctor's can sometimes be the hardest part but you got thru it and hopefully will be a lot better soon! Congrats hun, we all care......Keep us posted as to how your doing, it might take a day or two for the new medications to start working, but if your not feeling better by Monday go to the doctor again, okay.
Your health comes first cause of your cute little daughter.....
Soft hugz to you........
Bluedog: are you taking any other meds like Singulair or allergies medications? Are you getting enough water and would vitamin C help? Smoke sets me off too, and have you had the blood test for allergies (RAST)?
Posted 10/18/2007 5:38 PM (GMT -8)

I'm with you Bluedog.  I take my Advair in the morning and in the evening.  I have a lot of the same triggers as you, any kind of smoke, especially cigarette smoke, perfumes, cleaning products.  And she will just have to learn to tell people if they smoke in their vehicle, she can not ride with them, because it can bring on an asthma attack.  Also, for me riding with someone with perfume can bring on an asthma attack.  I can't be around wood burning fireplaces either.

Bluedog, can you think of any other tips for her?  She really needs our help.  She is really starting at Square One, living by herself with a 21 month old daughter to take care of.  So, she needs to quickly learn how to get her asthma under control.

Thanks for your help!

Carla

Posted 10/18/2007 6:04 PM (GMT -8)

Sarah,

I know you mentioned that your daughter had GERD and had the surgery and was doing better, but that she was developmentally delayed.  I think you mentioned it because you saw that I had GERD.  I also had the surgery.  I had waited to respond until we were sort of on our way to getting you on your way to recovery first.

I did a little research on hypotonia.  Does she still have muscle tone loss?  Have they tested her for myasthenia gravis?  One of my best friends has this and they are making remarkable strides in treatments.  If you are comfortable in emailing me, please do so.  Put something in the subject line about HealingWell so I will know who it is.

Take care!

Carla

Posted 10/24/2007 2:37 PM (GMT -8)
I am so sorry that it took me so long to respond. THANK YOU! for everything, guys! You do not know how much it has helped. I think it has been about a week since the new meds. Something like that, sorry life is so busy right now that i don't even know which way is up! But anyways, the spiriva and symbicort with the naprosen and singulair have all helped out a lot. I am still thinking about breathing though, but it has gotten so much better! I think that once i get the meds in for my nebulizer, things will start getting way better. I got the neb today and tomorrow the meds should come in.

I don't know what all my triggers are, but I think it's practically anything and I've been living with it for so long that I was probably in an asthma attack all the time or something. I now KNOW when I can't breathe as opposed to me just suffering through it all day every day. You know? The spiriva has been a major help! I can't wait to start the neb treatments. Ok, so I take that back, I wish I didn't need them, but being able to breathe is so much better!

Cigarette smoke sets me off hard. So does the fog machines. My sister had a halloween party and turned on the fog machine, I COULD NOT breathe at all with that thing on and had to leave a lot of times. I also noticed that if I drink, my asthma gets bad, whether or not I am smoking (I DON'T smoke). The crisp cold air gets to me too. If I drink something that is super duper cold, I have little attacks too.

Thanks guys. I really am breathing better!

about my baby girl, I will email you, Carla. I  know that she has been tested for a lot of different things, but I never heard of myasthenia gravis. I'll have to do some research. I"m not sure if she has muscle tone loss. It's very hard to tell, because she has had problem after problem ever since she was a tiny baby. In my opinion, her tone issues seem to have gotten worse before the therapy, but the therapy has been helping her out. I'll email you.

What do you think about the nissen fundoplication? Do you feel much better after it? I hear that it can come undone. Has this happened to you?

-Sarah

Posted 10/24/2007 2:41 PM (GMT -8)
DER DER DER!!! eyes   I need your email. He he!
Posted 10/24/2007 7:39 PM (GMT -8)
Just click on my name and you will get it.

 

Posted 10/24/2007 7:45 PM (GMT -8)

Sarah,

No, I have not had any trouble with my Nissen's Fundoflication coming undone.  The only problem I did have and it was because I have severe asthma, I got a bad case of bronchitis before my hernia repaired was healed well enough and I now have a sliding hiatal hernia, which I am keeping.

Carla

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