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How do you get help?

I am new here I got the works:asthma,,allergies, eczema,migraines,chronic sinus crap and more.  With fall and winter coming I got a question. When you go to the ER how do you get treatment? Almost everytime I go to the ER for being sick or asthma flaring up I say oh it hurts to breathe deep and all but they keep me waiting once was a 3 hour wait. Then they tell me I am not wheezing(which I typically do not do) and therefore no treatment is needing and that I can go home and I look like a fool for going and one time went there as my doc toldme to go for throwing up bad after coughing as I was sick and they said I was fine to go home and I threw up for 2 hours once home because of coughing. I feel helpless going to the ER yet my doc sends me there or tells me to go there when I am bad. So how do you all go to the ER and actually get treatment

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  • K8sMom2002

    Oh, my goodness! That sounds terribly frustrating! I hate that you have not gotten the help you needed when you went to the ER.

    For me, ERs have not always been the easiest place to get treatment. For one thing, there definitely can be a long wait unless you're in obvious respiratory distress and struggling for air with a low oxygen saturation level. 

    For another, the emergency room docs can be great — but they don't necessarily know me or my history, and they aren't allergists or pulmonologists. 

    I've been where you were — turned away from one ER because I was "too complicated" when I had the flu on Christmas Day. My DH had to drive me an hour to another ER, which was overflowing with flu cases, and the hospital didn't have a bed to admit me. They kept me until I was out of the woods, then had to release me.

    I think it's great that you are thinking this through now. Could you talk to your doctor and ask for an ? And can you talk to your doctor about what you can do when you get to the ER to make things go more smoothly? 

    In addition to asthma, my DD has a rare bleeding disorder. Her written emergency plan, issued by her doctor, instructs ER doctors to do certain tests AND to call her doctor or the doctor on call.

    Do you think your doctor could help you come up with an emergency action plan like that?

    As for other things that I've learned from folks here …

    • If you haven't already, could you make sure you get your annual and your ?
    • Could you talk to your doctor about a "sick plan"? A plan that you use when you first start getting sick with a cold or flu or sinus infection? Sometimes getting ahead of your asthma can help you stay out of the ER.
  • momofcutecat

    thanks for the reply did not expect one so soon.  I have an asthma action plan from old place I went to and asked my new provider I got this year for a new plan as mine said Symbicort and Xopenex and that was it and she said looks good to me, what did you want it to say?  I also gave her a list of 9 questions to answer and she only answered 3 of them and that was it.  I usually go to hospital my fam doc can practice at and one time I went there and said my doc wanted me to have salumedrol as I am sick and flaring as well and the doc there said I did not need any at all and said here is a script for it take it only if you get worse.  I once went to a hospital almost an hour away as that is where my old asthma doc was and her resident told me to come for iv steroids as I was throwing up from coughing and my flare was not going away I ge there wait awhile and even threw up from coughing in front of one of the docs and they sent me home saying I was ok just take cough meds.  I went to the hospital close to me this year for being dehydrated from the flu and he said I was dehydrated but that he was not going to give me fluids since I could eat again.  I go there a few years ago as was coughing bad and the doc came in and I said I am sick because my asthma doc took me off my 2 med inhaler and put me on 1 med inhaler and I kept having attacks and so now back on old med but am sick now because of it and he said no your sick do to an allergy.  he said to do singular and cough meds and I said no thanks those do not work for me and he said why did you come here then and what

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    Edited to remove extra spaces – CRR – 8/29/2018

  • momofcutecat

    sorry dang computer.  he said what did you expect when you came here and what did you want.  so the hospitals around here are wacko.  I always go to my fam doc for my asthma as he is better help to me then anyone else and my old asthma docs office you called to say you were in trouble and needing to see your doc they say oh she booked till your next appointment so I say can I see someone else and they say no here in this office you are not allowed to see another doc unless it is prior approved.  oh and my allergist sucks I went to him for my new mold allergy and had really big bad welts on me for bug bites and he should not tell me what the bites were from thought maybe fleas as I reacted to them before and he could not tell me.  I said what do I do  for the severe itching and he said alga for a few days and that was it.  I give up on all my specialists.  I want to say goodbye asthma doc,allergist and ENT

  • K8sMom2002

    That IS frustrating! Have you reached out to the hospital's patient advocate? 

    I think it's a good choice to go to a hospital where your doctors can practice.

    When is your next regular appointment with your regular asthma doctor? Could you bring this up then and say, "Hey, I call here, your staff tells me that I can't be seen by anyone else and for me to go to the ER … but when I get there, nothing happens." 

    You could point out that going to the ER

    • exposes you to other people's germs
    • costs you lots of money for not-so-great care
    • takes a lot of time when you don't feel so great anyway. 

    Can you ask to get that prior approval for another doctor as a back-up? Could you ask if there's a nurse practitioner or a physician assistant who could see you?

    What does your family doctor say about the problems you have had? Could your family doctor reach out to the director of the ER and see if anything could be done? 

    And when you do wind up in the ER, on the way, could you or a family member write things like this down:

    • when your asthma started flaring
    • what your peak flow is now (if you keep up with your peak flow readings), and what your best peak flow usually is
    • what and how much medications you've taken
    • when you last took them
    • if they helped

    That way, you don't have to think when you're struggling to breathe and you're in a busy ER. 

    Also, if you're in your red zone and breathing is extremely difficult and not improving after you've taken your meds, definitely call your doctor and call 911.

  • momofcutecat

    I am never in red zone my peak flow is usually always in green even when I am sick and flaring.  as for writing stuff down my mom who takes me hates doing it and usually makes me go back alone or drops me off to go shopping.  and the old asthma doc I got rid of that practice and I got a new one but the new provider I see is no help either the first time I met her she would not answer my questions and I said when I go to the ER they tell me no wheezing means no treatment and I can go home and she said well that is right u need no treatment if no wheezing and I said I do wheeze much.  the old place I went to I did see another resident once and he did not see how much pain I was in and sent me home and I landed in the ER for pleurisy and I told the care people of his place of work about what happened and all they could say back was it was his first time seeing u he did not realize how much pain u were in and he is sorry and that is all I got.  and my insurance pays for all medical.  when I saw my fam doc for being at the ER for pleurisy I said about what asthma place did nad how the ER just gave me script for T500 and he said it is a shame that no one wants to help you he said it is a shame that I am the only one to believe in ur pain enough to want to help you fix it.  he actually said he felt sorry for me.  so if anyone would write me a note for going to the ER it would be my fam doc for sure, he is the best one I have.  I see my new asthma provider again in dec which will be in middle of my bad time

  • K8sMom2002

    I do wish you had family support! Is there another family member who could go with you? Could you talk to your mom and explain that you really need her help and her support?

    Sometimes peak flows don't always match up to symptoms. Have you seen AAFA's Know Your Asthma Zone chart?

    It sounds like you HAVE been in a red zone before. 

    When you say "no wheezing," do you mean YOU can't hear wheezing or they can't hear wheezing with their stethoscope?

    I always thought you were supposed to be able to hear wheezing on your own … but my doc explained that "wheezing" usually is something doctors listen for with a stethoscope.

    Also, if you're having breathing difficulties but your doctors are saying that test results aren't matching up, could you ask them, "Okay, if it's not asthma, then what else could it be?"

    There's a great resource called  that can help you talk with your doc about other possible causes for problems with breathing. Sometimes having the doctors think through those things will help them zero in and say, "Okay, we've considered everything, and this is the plan."

    I would definitely ask my doctor (and any ER doctor I saw), "Okay, if the ER releases me and sends me home, and I'm not getting any better, what do I do then?" 

    Can you see if your family doctor would reach out to your new asthma provider and get you bumped up on the schedule? Or could you call the asthma doctor and ask to be put on a cancellation or waiting list? That way, if an opening comes up between now and December, then you would be on the list.

  • K8sMom2002

    Just one more thought before I head for bed … I want you to know that you are NOT alone! Plenty of folks here have similar stories (maybe not quite as frustrating as you've had), and they can understand. Hang in there!

  • momofcutecat

    I saw new asthma provider when sick for the first time and she said I was fine and said we see people here every 4 months or so.  and as for the wheezing my fam doc has heard me wheeze a few times but not often, a friend heard me wheeze one day while I was talking to them.  when I see my fam doc he usually says I sound really tight and he is worried about me.  I just saw new asthma provider in june.  and no other family to help me my sister is taking care of 5 children that includes her lazy husband, my mom is a narcissist and my dad who lives elsewhere is one as well so no help from my family and sad thing is mu mom is now a pastors wife and still treats me bad. I am gonna take this 93 degree heat and go to bed soon as 2morrow is my day to volunteer in the baby room of a daycare oh what joy that is for me

  • momofcutecat

    Cynthia thanks for all the help yesterday it was much appreciated.  I moved on my own in Jan and it been down hill since.   I got a sinus infection like a week after moving in thought it was from stress of moving while on crutches and it being cold out.  Well that lasted a few weeks then in Feb I got the flu for the first time my fan doc gave me meds for it on a Thursday by Friday I was throwing up so bad that I could not even keep broth down, then following Monday was in the er for dehydration.  Then I got post infectious cough from the flu for weeks.   Then got into an asthma  flare as my then asthma provider would not give me pred for a possible cat allergy until after I saw my allergy team.   Then had another sinus infection  then in may got proven pneumonia.  Then 2 months later got possible pneumonia again.   And I had like 4 sinus infections already this year.  And I had like 2 asthma flares already as well.   Out of the 7 1/2 months I been on my own I only felt good like for a month.   My allergies were so bad I was snotting yellow and I was coughing up green  and I went to stay with parents for a few weeks for another problem so when I got home my symptoms went away.   There is constant black stuff in my toilet it was on my wall at one point near A.C. unit and I found fuzzy stuff on my clean dishes and when you walk into my place there is a bad smell that is really strong and I can smell it thru my big door.  I told my family doc that I had mold in my place he said no wonder u been sick so much.   He tested me for mold allergy he said it was positive for mold allergy but when I showed my allergy team the report they said I was not allergic to mold so IDK.     that is my toilet and office manager here and maintained both came here and looked and saw no signs of Nothing wrong in here but a leaky valve behind toilet.    this was a clean spoon taken out of my dishwasher and few days before that was a measuring cup IDK what to do low income housing and I emailed the office saying what is wrong again and asked if a mold test could be done and they emailed back with everything in apartment looks fine to us and did not even offer to do a mold test even after I said I am allergic to it. 

  • K8sMom2002

    You really are struggling to overcome a lot of obstacles!

    Since you have had such a struggle with the flu, I would definitely encourage you to get a flu shot this year. They're usually available in the fall, so it won't be long until you can get this year's. And if you haven't had the pneumonia shot, can you talk to your family doctor about it? People with asthma should have the pneumonia shot even if they are younger than 65. 

    And please check out some of the ways people can prevent mold in their homes at .

    With so many problems with infections and the mold issue, could you talk to your allergist about your immune issues? We have had members here who have been diagnosed with suppressed immune systems … and that can make them more likely to get sick to begin with.

    And if you find that you're not making headway with your current specialists, could you talk to your family doctor about getting a referral to another allergist/immunologist?

  • Pljohns

    momofcutecat-I have some of the same issue you do-I've only been to ER once at my doctors orders-sat there for 5 hours, then they put me in a "pre treatment" area with all of last years flu cases and then the wacko doctor told me I wasn't wheezing and my chest x-ray looked good and told me to go home!  I had taken 60 mg prednisone for 3 days, doing albuterol treatments every 3 hours for a week and couldn't walk more than 5 feet without having to stop because I couldn't breathe and I couldn't talk a full sentence and he had the gall to tell me he didn't know what my problem was but I DID NOT have asthma.  I left in tears.  The previous times I've been in that bad of shape, I was admitted and spent at least 5 days with IV steroids.  I think doctors "cookie cutter mold" asthma patients and if you don't fit their "mold" your out.  I don't wheeze either-never have-and that seems to be the thing with them-if you don't wheeze then you aren't sick.

    It sounds like you have several things working against you at the same time.  Is there a department of public housing that you could reach out to with pictures etc and let them know that something is wrong in your apartment?  

    making sure you get a flu shot is a great suggestion.  I get 2 a year-every 6 months apart because of my severe asthma.  I also track peak flow numbers and can tell you in a heartbeat what mine is running and how it acts under certain conditions (when I'm getting sick etc).  

    Sending tons of your way that you will soon find a good care team that can work with you through the problems and get you feeling better!  You are definitely NOT alone in this-you will find wonderful support and understanding on this board and we encourage you to post or start new threads.  Hang in there-it will get better

  • Melissa G

    Hi and Welcome Momofcutecat! Cynthia and Lynn have already given you great advice! Sending you lots of !

  • Brenda Silvia-Torma

    Hi @momofcutecat, welcome to the forums!  I'm so sorry that you're going through all of this but am glad you found AAFA. As Cynthia and PLJohns said, you are not alone!

    That is extremely concerning that mold is showing up on your utensils and elsewhere in your apartment. Cynthia and PLJohns have given you some great ideas/suggestions and my only addition is:

    • To consider contacting the Green and Healthy Homes Initiative. Their mission is to break the link between unhealthy housing and unhealthy families by creating and advocating for healthy, safe and energy efficient homes. On their website, they have an Ask the Expert section. Here, you'll find out what You can also submit a question on that same page and someone from the organization will get back to you. 

    I had an asthma exacerbation in early July and was told by the ER doc that I wasn't wheezing either. Later, when I asked my asthma NP about the non-wheezing, she said that people don't always wheeze when they are experiencing an asthma attack. And, that if the ER staff do not want to treat me for asthma, they should call her office and the doctor on call will tell them how to proceed.

    Once you get settled in with a new allergist, perhaps he/she can incorporate similar written instructions in your asthma action plan. The instruction could be something along the line of "if the ER doctor has any doubt about treating patient for asthma, that doctor should call the patient's asthma specialist so that he or she can provide instructions as to how to the treat the patient."  

    Sending you lots of hugs and good thoughts that you are able to find a new doctor that is helpful and that you are able to resolve the mold issue at your home.

    Brenda

  • momofcutecat

    Cynthia: there is no other allergist that takes my insurance so I am stuck with the one I have 

    pljohn: I do not wheeze much, I do not at times but rarely.  and you are right about the ER- no wheeze means equals go home.  I told apartment office manger here twice about the mold she claims she cant find anything even after I showed her pics.  as for department of health people told me to contact them about problem then a friend said no do not do that as if you do then apartment place might deem u as a problem tentant and might kick you out for complaining.  my peak flow is always normal even when sick or in a flare or attack, sometimes I have yellow zone but not often

    Brenda: people say mold is growing as to hot in my apartment as A.C. broke and I never used it as it made my asthma and allergies worse.  I got a new asthma provider this year at a new place and she was wacko to say the least.  I said when I go to the ER they say I am not wheezing and send me home no treatments given and she said if you are not wheezing at the ER then there is nothing they can do for you but send you home, and what did I expect them to do.  my fam doc is the best one I have.

    I would love to ask my fam doc to write me a note for when I go to the ER but I am not sure how to ask him to do that, I mean he is the one that tells me to go so I feel he should write it but I am not sure how to ask him to write it

     

     

     

     

  • K8sMom2002
    momofcutecat posted:

    I would love to ask my fam doc to write me a note for when I go to the ER but I am not sure how to ask him to do that, I mean he is the one that tells me to go so I feel he should write it but I am not sure how to ask him to write it

    Could you make an appointment for a check-up when you're not sick and you're feeling okay (you could make it your annual physical), and take that time to say, "Hey, I need a better plan in place. What can I do to stay out of the ER? What can I do to get better care when I get there? Can you write me a note that I can take with me?"

    Another possibility … could you call your insurance and ask for help? Sometimes when you explain your situation, they can have experts look over your medical records and send you to another specialist who can work to get to the bottom of this. 

    It's in their interest to reduce the number of trips to the ER, so hopefully they'll be willing to help you get your asthma under control. They may even give you an okay to see another asthma provider.

    Could you report the AC to the landlord or apartment manager? Keeping the humidity down in the apartment is really key to getting a handle on the mold. 

  • momofcutecat

    no I cant report the A.C. unit as they do not supply them here and the one that was here was left over by last tentant and I said I did not want it but they left it here for me anyway so since it broke it is my job to get a new one if I want one.  and last time I saw the allergist I was ok all I was there for was severe bug bites and to talk about my mold allergy so I was well then and got no where with the allergist

  • K8sMom2002

    If money is tight, can you look for an AC at a thrift store? Or reach out to organizations like churches or Habitat for Humanity's Re-Store? 

    As for the bites, which doctor had a look at them? Did you say the doctor thought they were flea bites? Or did you think they were flea bites?

    Scratching is hard not to do when something itches, but it's important because scratching can lead to infections. Could you try ice packs to relieve the itch? Or talk to your doctor about a topical cream to help? 

    Are you on daily antihistamines?

  • momofcutecat

    my parents have one they can give me they are just not sure if it would fit in the hole where the one I have is at now.i am on allerga now was on prescription allergy meds and it made me so drowsy that I could not take it and slept all day so now on allerga, and my allergist is the one that saw my bites and could not tell me what the bites were from.  I said one friend said bed bugs I said fleas as I got bit by fleas before and I said no one is getting bit at my parents house but me so I think fleas and the allergist thought maybe fleas as well but was not sure.i did try ice did not help much tried other home remidies as well and my fam doc was told what allergist said and he sent me in a steroid cream that was lil helpful so then he said use Benadryl spray

  • Shea

    Did you get tested for cat allergy? I am very allergic to cats, but tried an allergy medication and it seemed to make my symptoms go away enough to where I moved in with my (now ex)boyfriend who had cats. After 2 years my allergies seemed to come back in more unusual ways, and turned into asthma symptoms, and chronic need for tapers on prednisone and ER trips for nebulizers, my primary doctor eas not helpful and I actually had a heart attack at age 26 from allergic eosinophils surrounding my heart (now-exboyfriend would not find homes for the cats even after that and after doctors diagnosed me with a severe chronic allergic disease and told me not to live eith cats) I had to move out, I was diagnosed with a disabling severe chronic allergic disease that I KNOW I wouldnt have got if I never lived with cats and I kick myself in the butt for that EVERY day. Pet allergy is no joke. Pets are not meant to make us sick and should not be put above our lives by us or anyone else. We wouldnt put them around what makes them sick or suffer. I know it is hard I know more than anyone. And I dont know if that is your situation but if it is…. I would strongly recommend not living with whatever you are allergic to even if you have to move. Your health and life are worth it. It may seem impossible but, if you have to, you can do it! I did. I temporarily lived with a high school friend in a different state with my newborn child right after nearly dying, unable to work, and struggling just to get insurance/disability/ and support. My family ended up helping me get a place back near them after a year, after being unable to work or go to school due to all my se ere health and allergic issues affecting all my organs,  I applied for disability, and after 2 years of battle won disability, and now have my own place with my son and we make it. It took a lot of work and praying and help from others and it was not easy. But I still wish I could go back and tell myself never to live with cats… So that is why I am just saying– if you are allergic to it.. Dont live with it. 

  • momofcutecat

    Sorry to hear that.  I saw the NP not my allergist  and she said she did not think current testing was needed as my symptoms were pointing to it such as itching when holding my cat and asthma attacks as well but last Oct had allergy testing done and it was negative for cats

  • momofcutecat

    Forgot to say i am ok with my cat now and do not seem to have problems with her I think it came on over winter as i just moves and my cat lived outside all her life then I moved her inside with me but am ok with her now

  • Melissa G

    If you call and talk with your dr and he instructs you to go in, ask him to call ahead and let them know you are coming in and how you need to be treated. We do this with our youngest. It does help. 

  • momofcutecat

    Melissa usually I got at night time well evening or weekends when my doc is not in the office and I am not sure if he returns his phone calls himself or since he is part of the medical group that is all over town if someone else will answer it he is part of one of the hospitals medical groups and when I me with a doc to see if he be for me I asked if he answered my calls and he said that him or another doc from another office could answer me back so idk about here did not ask that

  • Shea

    Was your allergy test a blood test or skin prick test? A skin prick test is more accurate and sometimes a blood test will come back negative even in highly allergic peopke because it only tests for one protein whereas the skin prick test tests for multiple proteins you might ve allergic to… Thus link does a better job explaining it but if your symptoms came on when the cat became an indoor cat, itd be worth getting a skun prick test if you havent. (Here is the link: )

  • momofcutecat

    I had 2 skin tests last ne being in oct and all was negative but dust and I had blood test this year for mold allergy and when I saw them in april they said no need to rest me again

  • Melissa G

    There's a saying that "reaction trumps results". I test negative to everything but dust and mold, but it is obvious during certain times of the year that something is bothering me. 

  • momofcutecat

    Melissa sorry to hear that.  everytime I go outside I sneeze bad way bad but am not allergic to anything outside

  • Shea

    Gotcha. Well it is good you did the skin tests! … but it is a bummer that you haven't figured out the cause yet of the symptoms. Not all asthma is allergic asthma. And it can take time to identify triggers. This time of year is ragweed season–my son has ragweed allergies. It can get dragged on on shoes, clothing, pets etc. And it is more humid where I live, we also have dust mite allergies. So for those two allergens I have zippered encasements on bedding and pillows, wash sheets weekly in hot water, and vacuum with Hepa filter vacuum and have the a.c. running at 76 and a HEPA air purifier in the room I sleep in. It took time for me to build up this arsenal of anti-allergy stuff. And I have no carpeting in my room and only area rug in the living room to reduce dust mites. Those things definitely help. Also, I have a nebulizer at home which is so great for when I have an attack that the inhaler doesn't help– so if you are having trouble with the ERs, you might want to talk to your Dr about a nebulizer and prescription solutions to help in that situation.

  • momofcutecat

    shea thanks.  I got home Neb and portable one as well that sometimes doe not last me the full time when I am sick.   It says I am allergic to dust but slightly I think.   My triggers arr: smoke, strong scents, cold weather and air,  being sick, laughing, exercise  and I have a sensitive to dairy

  • momofcutecat

    Shea my smoke allergy is so bad that all I have to do is smell it on someone's breath and I will start coughing bad.  And my mom used carpet cleaner one day and instant attack then later that night had another attack and next few times the area was vacuumed had more attacks.  When I first got asthma I could not go outside without coughing so bad I puked. I can't run without getting short of breath and the dairy thing when I have ice-cream I cough bed and when I have milk I get phlegmy cough, fag and throw up so I use lactose brand and seem ok

  • K8sMom2002

    Momtocutecat, does your kitty have fleas? One flea can do a whole lot of biting in a hurry, and feet are a favorite target. If you want to check your apartment for fleas, you can put on a pair of white socks and walk around an area, then check for fleas on your socks. Fleas see the color white as heat, and they like heat. 

    Some people can have an allergic response to bug bites.

    Years ago, when we first moved where we live now, our homesite was a very wooded area with a lot of deer, and the deer had fleas. We wound up with fleas in our yard that we brought into our house — disaster! Our pest control folks at the time suggested these steps to us following their treatment:

    • vacuum daily and toss the bag each day in a securely tied up separate garbage bag outside.
    • check for fleas in carpeted areas by using the white sock method and vacuum those areas, then toss the bag
    • make sure any pets that are indoor, outdoor or indoor/outdoor have been properly treated for fleas.
    • check for fleas on your feet, pants legs, socks or legs before coming into your home. If you see fleas, have them treated by a pest control company that uses an integrated pest management approach.
  • momofcutecat

    my cat had a flea bath and I did not see fleas on her and when younger I got bit by fleas but not as bad and I could see fleas but cant see anything now but did have ants but everyone said ants would not bite like that.so idk I seem ok now, the apartment place here has there own exterminator come out and ihad to wait 2 weeks for them to come so went home and that is where I got bit way worse

  • momofcutecat

    the struggle I real was babysitting today 7 hours went out fe times was ok then went to send kids off and smelled crap and started to cough and came in and then went to the store and smelled it again but left the area then lil before it got dark I went to go outside again for fresh air and thought fresh air my butt my neighbor above me smokes and has her front door open and boy can I smell the smoke coming from it which can send me into an attack so when she had her door open I cant really go out the front door just to stand there for fresh air it sucks and since she smokes in her place and I go to my closet for anything mainly for a snack it smells so bad of smoke that I had a few attacks because of it and then my clothes come out smelling my smoke.  it is not fair to my lungs

  • Melissa G

    Oh no on the cigarette smoke! Is there anyway to move to another unit that the building is smoke free? My parents smoked when I was a kid and I landed in the ER several times until they quit. I am so sorry you are struggling today. 

  • momofcutecat

    People can smoke here and i want to look for a new place anyway as this one has bad smell and mildew in bathroom and mold on clean dishes so trying to find somewhere else to move but 1 i like the area and 2 no other low income places available right now

  • Melissa G

    Oh, don't do that! Please hang on! Is there anyone that could help you find a new place?

  • Shea

    That is tough about the smoke– it could be a problem anywhere unless it is a smoke-free building. It is a good to keep your eyes out for places that are smoke-free, but you might find a solution that allows you to stay too. I used to live in a duplex and had great low rent on it– better than I could even find for low-income places, so keep your eyes open for duplexes too– my duplex neighbor smoked but I had enough distance between us to keep it from bothering me (Apartments tend to be closer so it really seems like youd need a smoke free building). Fans can sometimes be helpful, like a floor fan that you can blow the smoke away from you/your door. Also sometimes it can be helpful mentioning your issue to the neighbor (as politely as possible)– they might walk down the hall to smoke or smoke out the back patio instead or something– some may decide to use and e-cig.. It might be worth a try to just mention your problem.

    Those are all tough triggers you mentioned above. I am glad you have a neb and portable neb, and have found lactose-free milk is working. I also cannot run much without my asthma flaring up, and struggle outside depending on the weather/pollution. One of my main missions after diagnosis was to make my home environment a sanctuary because I felt soooo threatened by so many triggers outside– I didnt even go out for more than 2 hours a day for a while because I had so many attacks. Now I have found many places I can tolerate, and I can go out fir longer amounts of time than before, and have picked up a few tools like bringing my asthma masks around with me and my portable neb and inhalers and epipens and– I havent had a huge attack in almost a year now. I also take maintenence prednisone for my chronic allergic disease, and I will lower my dose soon and when I do, I am so much more sensitive to everything again, so I will have to baby myself during that adjustment (I am waiting until low allergen season with cooler, less humid weather to do that). 

    The problem with my disease is that even if I get my asthma and lyngs OK with the steroid inhalers I use, my skin will break out badly if exposed to allergens and I get this itchy hives rash all over my chest and back. It happened today, I just took extra benadryl tonight so hopefully it will go away.

    I know its tough to have issues breathing and coping with all that seems so out of your control! I hope you keep finding little tools and tidbits of things that work and find or make a  home environment that you feel comfortable in (free as possible of mold/mildews/chemicals/smoke triggers).

  • momofcutecat

    First my rent is here is only 144 a month.  It is an apartment i live in but it is set up like a row of townhouses.  So you have an apartment on top then bottom then on other side of me is same thing but front doors are side by side and my closet is her stairwell.  Sorry you are so bad.  I mainly am scared to go out in the winter as 1 cold weather makes my asthma worse and because i know in winter I get sick more.  I did not realize this one was smoke allowed  when i decided to put my deposit down.  I do not get support  anywhere near me.  My mom does not believe in my asthma much and when i am sick she thinks i am faking or that I am not as sick as i say i am and if she thinks i am not that sick then she says I do not need medical care and often when livin st home denied me urgent care and the ER.  She would say the ER is for emergencies only and you are not an emergency so therefore you are going to the ER.  One time while at home i said mom i need to go to the ER I am sick and my asthma kicking in and it hurts to breathe deep, she said oh i have church thing 2night i have to go to that, besides it's just your asthma go lay down and it will go away, i will take you 2morrow night if your still bad.  Next night she comes home and sits down i look at her and she says what do you want (if she promised me hospital next night she would forget about it next day) so finally she figured out ER now and she said oh i have to go to church again to do something maybe when i get back we will go.  She is a narcissist and verbally and emotionally abusive to me and medical neglect.  This year got the flu for the first time and dealt with it on my own then one weekend could not keep anything down but water not even broth so that Monday my doc said go to the ER I agree with you that you might be dehydrated, getting up made me real dizzy and all so i knew dehydration set in. So the ER close herr I hate and wanted to go to hospital my doc can practice at but when i called my mom to ask if she would take me she got ****** and said fine we go to one close to you and i tried to say no I hate that one but she said we go there or you can forget it.  So we went and of course I was dehydrated but the ER doc said you are dehydrated but no fluids needed since u said u can eat somewhat normal again.  So when we came home my mom before leaving said i thought I told you once you moved out all this **** would stop and i would stop helping you like this.  My doctor Sent Me to the ER a second time this year to make sure my pneumonia are was just pneumonia and nothing else because it was really plaguing me and I didn't want to tell my mom because I knew she would tell me know so I walked to the crappy hospital here to get care but when I had the flu it was February and cold and no way was I walking to the hospital in the cold weather when I was dehydrated dizzy semi throwing up and miserable.  I want to ask my fam doc to write me a note for when i go to the ER as they don't hear any wheezing in me and say I'm not wheezing I can go home and one time I went there because I couldn't stop throwing up from coughing and they sent me home because I wasn't wheezing and I proceeded to puke for 2 hours straight when I got home I don't typically weaves I'm more tight chested with access with a stethoscope then I am Weezy and I told my new pulmonologist about the ER making me mad and she said why I said because they told me I'm not wheezing and there's nothing they can treat and they sent me home she was like what do you expect them to do if you're not wheezing there's nothing they can do for you and they have to send you home I thought you idiot some asthmatics don't wheeze.   so I want my family doctor obviously to write need to know cuz he knows me he believes in my pain and he's one of the best doctors I had I want him to say something like my patient is more tight sounding with a stethoscope then she is Weezy so please do not dismiss her when she's not wheezing and if she comes into the emergency room please call me so I can go over her case with you because I always follow up with him of course and when I follow up with him and I'm like I went to the emergency room like you said because of throwing up with my coughing and they told me I was fine nothing was wrong sent me home and I threw up 2 hours after that because of coughing and he can just look on his face like really they didn't do anything and I'm like no they didn't the one time I told him I saw another Resident where are used to go because mine was busy and the guy didn't know me and told me that my severe pain was 2 ride it out The Weeknd and it's still in lots of pain Monday call for an x-ray I had severe pleurisy pain for the first time ever and my chest hurts so bad I going to take it so that residents shenanigans landed me in the ER the next day and the ER doctor gave me IV steroids said I was fine based off of the CT scan and gave me a script for Tylenol 500 which is stupid because my family doctor give me Tylenol 3 so when I saw my doctor is follow-up because I was still in pain I told him what the resident did and I told him what happened at the ER he was like I am so sorry for you right now he was like I can tell you sitting up here in my exam room in pain and it just sucks that I'm the only doctor Who believes enough in your really bad pain to want to help you with it

  • momofcutecat

    I forgot to say when i told my fam doc about the resident  and what he said and didn't do my doctor looked at me and said that is very unacceptable of them to do that so he was very ****** off that I got treated like that.  And one time you and I had my pneumonia for the second time this year but wasn't documented the second time I mean wasn't proven he said when do you see the pulmonary next and I said soon I said because I went and got a new pulmonologist because my other one when I told him I had pneumonia and asked him what he wanted to do from his standpoint he told me basically to ride it out and if needed go to the ER and didn't want to see me till my appointment in August so I told my doctor I was getting somebody else because my current provider for pulmonary didn't want to help me when I had pneumonia and I wanted somebody else he was like I don't blame you for getting somebody else since your other provider didn't want to help you

  • K8sMom2002

    Momofcutecat, I hate that you aren't getting the family support you need. It sounds like you have an affordable rent, so it's a shame that your new and affordable place to stay is not allergy friendly.

    Do you have other folks that you could reach out to for help to get you to the ER you prefer? Friends at church? Neighbors? Other friends? I'm not sure how close you are to where you used to live, and I know without reliable transportation, it's hard. 

    When you're looking for a new place, could you concentrate on places that are closer to the ER you prefer? Because most ambulances take you to the closest ER … so if you can make it the closest one, then if you have to go to the ER, at least you'll be near the one you prefer.

  • momofcutecat

    i got no one else really.  and I am about 30 minutes away from the hospital my doc can practice at, but my mom never wanted to take me there as it was father away from the one I am in walking distance to now.  my parents house was 45 minutes away from my doctor and about 40 minutes away from the ER and now I am 30 away from his hospital and about 35 away from his office so I am closer from here.  where they are there is no low income housing available there I looked into it and  there is none.  there is a bus system here I do use but it has many flaws, it comes to my apartment to pick me up but if I want it for Tuesday then I have to reserve  by 11am on Monday to get it for Tuesday, if appointment is at 11 you say u want there at 1030 as the bus has gotten me late to appointments before so always say u want there early.  for my ENT and allergist an hour and 15 minutes away and my new asthma provider 45 minutes away other direction you can only be there between 10–2 wit the bus after 2 u have no ride home.  I hate admitting this as I feel people will disown me when I say this but my mother got me into a social service program to help me make friends and I was having them take me to appointment all the time and I did not know that they were not really allowed to do that as no one said anything and then all of a sudden one day they stopped taking me saying they could not do it anymore and they come 3 days a week so I only have  2 days a week to go to appointments and 1 day a week to see my doc as he is not open the other day I have free.  my doc does have this walk in hour from 8-9 that I can go to it is 1st come 1st serve but the bus will not have me there at that time from my place claiming they cant leave my city till 9, but they will do it from my parents house which is farther away but my mom refuses to bring me home to do that anymore so I am stuck half the time trying to get care when my doc is booked and cant see me unless it is at the emergency hour.  I really like my fam doc he is the only doc to believe in my pain so I am gonna keep him but sometimes hard to get there when needed. I am def gonna send my doc a message about writing me a letter for the ER saying something like my patient is more tight then wheezy if she comes in call me so we can talk as to why she is there, but idk how to ask him for the letter,what would you say in the message to be able to obtain the letter that is needed to take with u to the ER? cause it is true here that most ER's look for wheezing and when the patient Is not wheezy they say u r fine nad send me home, they do not even give me any neb treatments, and no matter how many times I say my doc sent me here for this or that reason most times it is ignored.  I feel at a loss and I have no support at all, I wish I could find someone with asthma close to me that can help me out with maybe rides when needed and I would pay them with a nice meal if I could not give them gas money.  I had a so called friend in the same program as me and he has asthma to but he said he did nto believe me all the times I said I was sick he said I had to learn the difference between asthma attack and anxiety attack and until I learn the difference and know which one is which and learn to better take care of my health then he can no longer help me with any of it as he is more or less tired of all my drama.  I would love to start an asthma support group in my area for any one around here that has asthma but idk how to go about that or where to even host the meeting at that will not charge an arm and a leg to let me use there space. well time to go get laundry while dr phil is on a commercial.

  • Melissa G

    You can look for a  I am truly sorry for all that you are going through. It is difficult when others do not believe your struggles. 

  • K8sMom2002

    Wow, Momofcutecat, that is a complicated thing!

    As for the social services program … could you make an appointment with your doctor and then ask the program not to come to your home that day? I would hope they would understand about doctors' appointments.

    Also, that's really frustrating about your transportation limitations. It sounds like your doc is in a different town than you are in. Do you drive at all? Sometimes, depending on your city, there are short term rental cars available — zip cars. Or there is Uber or other taxi services. Could you figure out whether those options are doable occasionally? I know that they are more expensive than the bus, but if you get the right care from your doctor at the right time, you might be able to avoid the ER.

    Hugs on the friend not believing you … asthma is a tricky, complicated business. To make it even more complicated:

    • anxiety can trigger an asthma attack
    • an asthma attack can trigger anxiety
    • a panic attack can be confused with an asthma attack
    • an asthma attack can be confused with a panic attack

    And sometimes you can have asthma and some other disorder that makes the two harder to manage. When you ARE able to see your doctor again, can you talk about what other things might be making your asthma worse? Or if there are other things you need to rule out?

    AAFA's resource about  can help you and your doctor figure out if there is something going on besides asthma. At the very least, you can then tell your friend, "Well, yeah, I asked about that, and my doc says no, it's not anxiety or a panic attack."

  • momofcutecat

    i try to make my appointments for days when I do not have the program people here as they prefer I not cancel for appointments but my ENT is only available on days when I have the program so I do have to cancel them at times for appointment but I try to go on days they do not come and or go after they leave.  I use the bus and it is free for me to use for medical purposes.  I do not drive at all, so I rely in the bus or someone else to take me to appointments.  I know both asthma and anxiety can cause shortness of breath but for me I do not get that unless I am exercising, my asthma attacks are just a bunch of coughing till I gag and that is it so I know it is asthma as I doubt anxiety will cause coughing.  my fam doc with the bus I can prob go there from 10-5 as bus will let me go there that late but for my other appointments which are farther away have to be done by 2 as after  no more buses go that way.  and I see my fam doc when sick but I can have bronchitis for a month or more and I will get pred and maybe 2-3 antibiotics and I cab be into my illness for a few weeks before I I get way worse and say throw up from coughing so I end up in the ER for being sick as I get worse and get pain when breathing or because my doc sends me there as I cant stop throwing up from coughing.  I know my doc always says I am tight and I will send my one good chat friend voice clips of me coughing and he will say I sound bad and I sound tight as well, so my friend hears my tightness as well just from me coughing and a few times while voice chatting with people they have said oh your wheezing and I say I am? I just took a breathing treatment and they say yes I can hear it in you.  my fam doc always gives me pred 20mg for 9 days worth of a taper.  I was told in the beginning that my asthma was mild intermittent and once I emailed my my then asthma doc who was dif then the one who said what kind of asthma I had to tell him I had pneumonia and he then told me my asthma was severe(which is not just uncontrolled at times) and said oh pneumonia no big deal take ur meds and if you get worse go to the ER and call me nutty but I thought he should have seen me and did his own eval and stuff and not blow me off and he did not even w ant to see me till my august appointment and I got someone else who is crappy as well and was kinda rude saying that my so called pneumonia that my fam doc claims he heard but had no xray to prove it should have not been treated with an antibiotic and that if I went to her office for chest infection no antibiotics would be given for it as an antibiotic is not needed for chest infections.  so as u can tell by now I wanted to smack her

  • K8sMom2002
    momofcutecat posted:

    I know both asthma and anxiety can cause shortness of breath but for me I do not get that unless I am exercising

    Momtocutecat, sounds like you have made the best of a bad situation! 

    I noticed that you said above that exercise is a trigger for you … have any of your doctors suggested pre-treating with an inhaler before you exercise?

    Another thing that can help, and I may have mentioned this: keeping a detailed symptom journal. This great AAFA resource talks about keeping symptom journals or diaries: .

    Sometimes when doctors see how frequent your symptoms are, that's when they say, "Hmm … you're using your inhaler more than two times a week. Let's see what else we can do to get your asthma under control."

    As for antibiotics … many docs are really hesitant to use antibiotics like they used to, because of the increase in antibiotic resistant bacteria. Still, when you have asthma, it's always a good idea to check with a doc and have them evaluate you. My DD's doc's rule is that he waits for two weeks before prescribing an antibiotic … if it's longer than two weeks, then it's a good chance, he says, that it's bacterial. 

    For me, my own doc will prescribe an antibiotic more quickly because I've had a history of severe secondary bacterial infections that resulted in pneumonia and bronchitis. But I always ask my doc, "Do we absolutely need antibiotics? I don't want to take them unless you feel it's absolutely necessary?"

  • momofcutecat

    I mainly have dis when running and no one said to pretreat.  I use a phone app and write down when i have an attack what caused it and what I used to treat it.  My fam doc will always  give me antibiotics for chest infections.  What does dd mean?  And sorry i just got up from a nap was awake half of last night in pain and was crying and still in pain some today and been tired and nauseous

  • K8sMom2002

    Oh, no … so sorry that you were in pain and had insomnia. Not being able to sleep always does a number on my asthma, and it can definitely make me feel queasy as well.

    Good for you on keeping a phone app with your symptoms — that makes it handy and convenient!

    Sorry about the mystery abbreviations. DD = Dear Daughter. My fingers get tired of typing! I use that and DH (Dear Husband) a lot.

    Here are some other  in case we spring any other thing you might not understand right away. Things like:

    HTH = Hope this HelpsIIRC = If I recall correctlyIMHO = In my honest opinionIYKWIM = If you know what I meanKUP = Keep us postedKWIM = Know what I meanLOL = Laugh out loudMIL = Mother in lawOTOH = On the other handPITA/PITB = Pain in the ButtSIL = Sister in lawSMH = Shaking my head

    I hope you can talk to your doc about a pre-treatment plan before you start any kind of exercise. According to my doc, exercise can be really good for the lungs, but I need to pre-treat before I exercise to help prevent an asthma attack.