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Welcome to our new members in February!

Here's a welcome to our newest members of the Asthma and Allergic Diseases Support Community!

I'm Cynthia, and I manage adult onset asthma. My daughter is a busy teen with asthma and eczema, so we see it from both ends of the perspective.

We hope you feel right at home with us. This space is a wonderful source of support, quality information and plenty of encouragement!

Settle in and get to know us, then maybe see how other members are , or how they deal with , or even how we encourage each other in getting good food on the table despite asthma and allergies in our thread.

Feel free to explore the forums, ask questions, and share your experiences with us. 

Also, handy tip: make sure you bookmark our  so you can easily find your way back here.

So help me welcome: @Mommy2Noah, @MomofCase, @Peach, @Lindysq, @Stacey Stanley, @Theplussizequeen, @Jesscough, @Sandy802, @sonjnj, @Ivonne, @Sbg, @Martha Anne, @d, @JustinTeresi, @Debra K., @P watson, @SweetRee, @Marisol, @MamaDun, @Casey, @Bridgette, @MLJ111, @asthmamomma5410, @Clkw, @Shaunda, @Daryl Baughman, @Cindyburns, @Deanna Shaffer Pastor, @vivian stallworth, @Helen Mangum, @Joy Sowles, @JoAnn, @Lynxie, @GinnyB, @Tibblets, @Dea, @MzRashid, @Rosey rose, @Chery, @Cheri, @Heath, @cherry, @Irene wharton, @Rob, @Kelli56, @Cindy Hildenbrand, and @Jorge R

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  • cherry

    thanks and will be in touchlots of legal problems in the apt-has been out of there bec.of the blacktoxic molds all through out including the human feces coliform bacteria inthe walls of my apt from the sewage ,repeated floodings since 2003.thanks for reaching outOn Wed, Feb 7, 2018 at 12:27 PM, Asthma and Allergy Foundation of America <support@aafa.org> wrote:

  • K8sMom2002

    Oh, my goodness, @cherry! That sounds like an extremely bad situation to be in!

    AAFA had a really good blog post with helpful tips on it right after Hurricane Harvey (and Irma and all the hurricanes we've had this year.)

    Would any of those tips help? Do I understand that you are not living in that apartment now?

  • Pljohns

    @cherry-what a terrible spot to be in!  I hope you are able to get out soon for your health, if no other reason.

    Welcome to everyone else as well!  We're sorry that you had a need to search out a asthma support forum, but glad you found us.  You will find a wide variety of experiences, suggestions and comments but most of all, you will find the most AMAZING support anywhere.  

    I'm Lynn-managing adult onset, non-allergic asthma.  Sometimes life just isn't fair and it just shouldn't be this hard, but we are all here for you, we truly understand what it's like to live like we have to.  Jump in on existing topics or start new ones-we welcome anything.

    Welcome again!

  • Megan Roberts

    Welcome all! We're so glad you've found us.  

    @cherry I am so sorry to hear about your housing situation. I suspect I developed asthma/allergies as a child in part due to mold that grew in the attics of the airforce base housing I lived in as a child. When the eves near the roofs were repainted the workers accidentally sealed over all the vents and mold grew in our attic as a result. It sounds nowhere near what you've been through but I can understand how mold growth (especially black mold) in your dwelling can affect your breathing and overall health. 

  • LK

    Welcome to everyone new! 

    Glad you are here!  As said above, this is a wonderful place to connect with others who are dealing with asthma and other challenges in life.  I'm Lisa and I have adult-onset, cough-variant asthma with many triggers.  I was diagnosed about 5 yrs ago but only found AAFA last fall.   It took me some time before I was willing to ask questions or post comments on these forums, but once I gathered the courage to do it, I felt welcome!  

    Hope to hear from you soon!

     

     

  • Emza

    HI Everyone! I am here because I have adult-onset asthma. I've had it for 4 years now. My triggers are exercise and cold, dry weather. I have no known allergies, except to dust mites. I still haven't found a medication that works for me. I struggle with breathing in daily activities like getting to work, taking the stairs, cycling, swimming, and pretty much any elevation. I have only a 5-6% increase in airflow with albuterol, and the steroid inhalers, even when used over the long term, don't seem to make any difference. So, right now I'm looking for some tips and ideas about how to get through this! I have (and still try to be) an active person, but instead of a joy, it is now a slog after which I need at least an hour of breathing recovery, even with daily use of my albuterol inhaler in the morning. It is both frustrating and embarrassing, since I am often left breathing heavily and/or unable to take full breaths, and others who notice get concerned. Not being able to exercise as frequently or as much is really tough, since I also struggle to maintain my weight. Any tips on how to treat/handle exercise/ cold air induced asthma would be great!

    Thanks!

  • K8sMom2002

    Hi and welcome, @Emza! I hear you on feeling like Captain Obvious when my asthma takes over. 

    And I also understand how hard it is to not be able to do things you once could. 

    What sort of tips has your allergist or pulmonologist suggested? Mine suggested pre-treating before I exercised and avoiding exercise in cold air without a proper warm up. She also suggested that I avoid strenuous exercise alone.

    Another thing that has helped me was figuring out ways to improve my . Since you mention dust mites, maybe that could work for you, too?

    I know that @Megan Roberts has really worked hard to overcome obstacles — she's a world champion gold medalist in dragon boat racing, so she's got other tips and tricks that have worked for her.

  • Pljohns

    Emza-welcome!  I'm sorry you had the need to find us, but we're glad you did.  You will find the most amazing group of people here with a wide variety of experiences, suggestions and ideas.  I'm adult onset as well-7 years now, with no allergies at all so figuring out triggers has been a challenge.  My doc and I went through every asthma med on the market-some with disastrous allergic reactions-until we found a COPD drug that works as well as anything.  I can no longer use inhalers-there is something in the propellent  that my lungs don't like so I can use nebs only.  

    the cold/weather changes don't like my lungs either so I've been wrapping a warm scarf around my face or using a cold weather mask.  Do you use anything prior to exercise?  Most of us do but definitely something to ask your doc about as well as possibly trying other meds.  it took a while for us to find something that worked.

  • K8sMom2002

    Thanks for reminding me about the mask, Lynn! 

    Another tip — I exercise how I can and when I can and I forgive myself a lot. My philosophy is I just need to beat yesterday. We actually have a "thread" or discussion .

  • Megan Roberts

    Warm winter greetings to the newest members of the Asthma and Allergic Diseases Support Community! 

    We hope you feel right at home with us — and it looks like some of you already do.   This space is a wonderful source of support, quality information and plenty of encouragement!

    So take off your shoes and join in the conversations about reaching , how you're , or how  are affecting you. Too specific? Jump in on our  thread, a vibrant conversation about whatever is going on with you today that you feel like sharing. 

    Feel free to explore the forums, ask questions, and share your experiences with us. 

    AAFA's been such a great help to me in better understanding my asthma. I hope you discover that, too! 

    Also, handy tip: make sure you bookmark our  so you can easily find your way back here. 

    Please join me in giving a hearty welcome to our newest members: @Angel, @Chris73, @Deone Yurchenko, @Dylan, @El, @Ellendup, @Emza, @Faye, @gautam, @haydee, @Herculesmom, @Jamie21, @Jayashree, @Joy Hughes, @juneis, @Kj2012!, @Mariaoct, @Mattk, @mdashiquennobi, @Miara, @Nancy Knight, @patsym546, @Peter Prakke, @Sadhna, @scout, @Sosa, @Tawnya, @valerie jackson, @Vince, @Vnes

  • LK

    Hello to all the new members! 

    Can't say enough good things about these forums and the kind-hearted, supportive people here.  Until I found AAFA last fall, I had never met anyone who has persistent asthma like I do.  The few folks I knew who had asthma weren't on any long term asthma-control medicines and if they had any wheezing, a puff or two on their rescue inhaler remedied the situation.  What a relief to find these forums and talk with others who understand the daily sometimes hourly challenges of living with persistent asthma.  That, in and of itself, makes asthma easier to live with.  Also, the wonderful sense of family and very much needed occasional touch of humor are ever present here! 

    I'm Lisa and I have adult-onset (about 5 yrs ago), cough-variant asthma.  I had the cough for a few years before I was diagnosed with asthma.  Some of my triggers are smoke, car/diesel exhaust, strong scents, cold air, stress, and others.  Sometimes I don't know what sets my asthma off.  I am currently taking several maintenance meds for my asthma. 

    Again, welcome!!     Look forward to hearing how you are doing. 

     

  • Vnes

    Hello all and thanks 

    I am Vnes, I am glad to meet others who have asthma like me. So many people think Asthma is not that bad. I am a severe asthmatic I’m on the highest dosages of my meds. My triggers are allergies and exercise induced. I’m looking forward to learning new things that could possibly help me and others. 

    Vnes

  • Pljohns

    Welcome Vines!  I too am on the max dose of all of my meds-severe uncontrolled non allergic asthma-it's a pain but I can tell you this-this forum is the most amazing group of people on the entire planet!  i've been here almost a year and they have helped me so much.  A year ago, I was the person hiding my asthma, not doing nebs when I needed them because I was embarassed to do them and in a job that was killing me-literally-60 hr weeks, a boss that was determined to micro manage-you name it.  Now, a year later and due in large part to the support and encouragement from this group of people, I'm wearing a mask to hopefully keep from getting the flu, doing nebs in front of everyone, have changed jobs and have a new, very understanding boss and MUCH less stress and generally being an advocate for myself.  People that don't have to live like we do, don't understand what it's like but all of us on the forum totally get it.  Welcome!

  • mdashiquennobi

    Hello all

    My name is Md.Ashiquen Nobi.I feel so happy to join this community.I am the sufferer of asthma and allergy.I have eczyma,asthma,food allergy and dust allergy.I get this from my father because he is suffering in psoriasis.I hope that in this community i can learn,share and experience new things that is best for the people have asthma and allergy problems like me.And thanks a lot Ms.Megan Roberts to welcome me.

  • K8sMom2002

    Welcome, @mdashiquennobi!  This is a great community with lots of encouragement! 

    What food allergies do you manage? 

  • K8sMom2002

    That's definitely the best way to manage food allergies! Which foods do you have to avoid? AAFA's food allergy division, Kids With Food Allergies, has a  which can help you find safe recipes without common allergies. 

  • Vnes

    Can anyone please advise me on what I can do to stop the pounds from adding up constantly taking steroids and getting shots for uncontrolled asthma.

  • Vnes
    mdashiquennobi posted:

    Foods that i avoid is eggplant,egg,lobster and cow's meat.

    Thank you. 

  • Kathy P
    Vnes posted:

    Can anyone please advise me on what I can do to stop the pounds from adding up constantly taking steroids and getting shots for uncontrolled asthma.

    @Vnes - steroids can be an issue for weight gain. It sounds like your asthma is not under control so you need steroids often? 

    I know when I have to take steroids, I'm always eating! Which is not good! And when my asthma is flared I can't exercise. Both contribute to weight gain. 

    Are you working with your doctor to try to get your asthma under better control?

  • MizWheezie

    I can't believe it has taken me this long to find this Forum – A friend from church told me to check out the "Asthma Foundation" to see if I could get some help with the cost of the medicine that I need to help control my asthma.

    I just turned 65, and received my Medicare card recently – However, being retired and on a fixed income (Social Security), I can't afford to pay the monthly premiums for the Medicare Part D (drug) supplement…

    Recently, the cost of my 30-day (Advair 250/50) inhaler went up from $349.50 to $412.00!!!

    Over the last few years, my allergy sensitivities (dust, pollen, grass, trees, etc.) have decreased, while the wheezing, chest tightness and shortness of breath have increased considerably.

    None of those Rx/Drug cards help – Does anyone know of any financial assistance available for people like me?

    Thanks in advance for your support nd replies.

  • K8sMom2002

    Welcome, MizWheezie! So glad you're here, and ugh on the cost of your medications! I'm guessing that the reasons the discount cards don't help is because you ARE on Medicare? And the programs don't allow that?

    AAFA has a web page that lists resources for , including non profit organizations that assist certain people, depending on their illnesses or their medications and the organization's current level of funding. 

    You might want to check out some of the non profit groups — I know some people have found help from the PAN foundation (that's listed on the page I linked to above) and also if your state has help for senior citizens. 

    State Pharmaceutical Assistance Programs (SPAPs are state-run programs that assist low-income seniors and adults with disabilities in paying for their prescription drugs. SPAP coverage varies by state, but the programs generally provide Part D “wraparound” coverage, meaning that they pay costs that Medicare Part D does not pay.

    •  
    • provide free one-on-one insurance counseling and assistance to Medicare beneficiaries, their families, friends, and caregivers.
  • MizWheezie

    Cynthia,

    Thank you so much for your reply – I will check out the resources you listed.

    Happy Breathing! 

  • Kathy P

    @cherry - how are things going with the apartment issues? 

    @MizWheezie - glad you found us! You are not alone with the cost of meds being a burden! I don't know what state you are in, but I know my mom in PA qualified for PACE, the state prescription assistance program. I don't know if your state has that or if you'd qualify, but something to look into. My mom never would have known about if the pharmacist hadn't told her about it and that it would reduce her out of pocket costs.

  • MizWheezie

    Thanks for your response to my post, Kathy!

    I have tried all of the (national) resources listed, plus my local (Virginia) resources, as well as the GlaxoSmithKline website, and unfortunately, they all indicate that our combined income puts us just (barely) above the requirement to be eligible for any financial assistance.  That's interesting, because trust me, we are not well off by a long shot.

    I find it ironic, because I paid into Social Security and Medicare the entire 42 years I worked full-time, and now, I can't get any financial help with just one medication.

    *Sigh*

    Oh well, at least I tried, right Ladies?

    The Lord will make a way, somehow. 

     

  • K8sMom2002

    Don't give up! Keep trying … another possibility is to call the Centers for Medicare and Medicaid Services and ask for suggestions and advice there.

    And we can brainstorm how to help you save the $63 dollar increase somewhere else in your budget … I call that "robbing Peter to pay Paul." It's frustrating, because as you point out, you worked hard all your life and paid into Medicare and Social Security. 

    Another possibility: does your Part D plan have a maximum out of pocket amount? It could be that after so many $$ that you pay, the dollars you are responsible for have a "cap" and you won't have to pay anymore after that.

    Also, several years ago, there was a "donut hole" of coverage gap … once Medicare recipients got through that donut hole, their coverage kicked in again. I'm not sure if that's still the case, because it's been a while since I looked.

  • MizWheezie

    The thing is: I only have basic Medicare (Part A and Part B) – I can't afford to pay $164 a month for the Part D coverage PLUS a co-pay for the medicine…

    I've done lots of research, and if I found a plan where the monthly premium is around $150 a month, and that covered the total cost of my inhaler, then it would be a better deal for me – ($150 for the monthly premium vs. $412 a month for the medicine), but it doesn't exist.

    Medicare and Medicaid people (repeatedly) said I don't qualify for assistance based on our combined income.

    Well, I'm happy that people who are doing worse (financially) than we are can get some help at least. 

  • K8sMom2002

    That stinks, MizWheezie!  Is there a chance that your doc could possibly provide samples for you, to at least help reduce the cost? 

    I do wish that incomes were tagged to your local cost of living. I'm lucky and live in an area of the country with a (relatively) low cost of living. People can get by on a lot less of a salary.

    But there are people who live in different areas of the country (or even my state) where housing costs, utilities and other expenses, not to mention taxes, are much higher. 

    I have heard of folks who worked all their lives in another part of our state, and they decided to retire here where you can have a much bigger house for the money. 

  • MizWheezie

    You are so sweet, Cynthia – I just "met" you, but I like you already. 

    Every time I ask my Dr. for samples, he says "Sorry, we're all out."

    Every dang time!!!??? 

    Makes me wonder if there's a conspiracy between the Docs and Big Pharma?  

  • Kathy P

    Samples can be tricky! I know my doc sometimes has samples for things and other times does not. Some clinics don't allow samples at all! Sometimes it depends on the drug manufacturer too.

  • Megan Roberts

    Welcome @MizWheezie! I feel your pain with the Advair pricing! The first time I went to pick up the prescription I had no idea what I was in for until I got to the pharmacy counter. "Nope!" was my response as soon as I heard the price tag. 

    I did some researched and switched to another similar LABA med that's made as a generic. Same ingredients, much lower price tag. There was even a coupon available for it on goodrx.com. It's still $50 a month, but that's more than $350 per month cheaper than the same ingredients were going to cost me as Advair! 

    So maybe that's another solution — asking your doc or pharmacist if there is a substitute that is more affordable. 

    Wishing you the best in your hunt for affordable asthma meds — please keep us posted how it goes!

  • Pljohns

    MIZWHEEZIE-I think most of us feel your pain with the $$ of meds.  We can't live without them but we can't afford them either.  I had allergic reactions to literally every asthma med on the market-some of them alaphalatic reactions-I have to use a COPD med off label in nebulizer form-my main meds are $987.14/month and my inhaled steroid that goes with it is another $722-and they all hit my deductible until I pay $7150 out of pocket then they pay $80-no way to afford that.  The doc that has a clinic beside me is nice enough to sign for samples for me-the drug company doesn't have a rep but they have inside sales and I can call once a month and they will fax me a sheet for him to sign and fax back then they send the samples to him.  Don't know what I'd do without that.  It's the only med I can use but there is no way I could afford it and my old PCP declined to get samples for me after I was no longer her office manager!  Maybe, if there's no alternative med you can use, you can see if your doc would sign for samples just for you if you did all of the leg work to get a form for him to sign?  I found out how to do it by calling the manufacturer to see if they had a rep, was told no, but they had inside sales and here's how it works.  Sure is worth a try.  

    Have you ever used GoodRx?  As long as you're paying out of pocket, it would at least show you where the cheapest price in your area was and that might save you some $$ too.  do you have a pulmonologist and a primary care doc?  If so, maybe you could check with the one other than the one that never has samples.  Worth a try at least-

    Welcome to the forum!  You will find an amazing group of people here with all sorts of wonderful ideas, suggests and most of all SUPPORT.  Feel free to jump in on existing threads or start new ones-we welcome all sorts of topics! Welcome again!

  • MizWheezie

    Thank you both for your replies – I will look into these suggestions right away and keep you posted – You Ladies ROCK! 

  • Megan Roberts

    Our warmest winter greetings to all the new members of the Asthma and Allergic Diseases Support Community from the last week!

    We hope you feel right at home with us — and it looks like some of you already do.   This space is a wonderful source of support, quality information and plenty of encouragement!

    So take off your coat and stay awhile! Join us in conversations about reaching ,  this winter, or how  are affecting you. Too specific? Jump in on our  thread, a vibrant conversation about whatever is going on with you today that you feel like sharing. 

    Feel free to explore the forums, ask questions, and share your experiences with us. 

    AAFA's been such a great help to me in better understanding my asthma. We are here to help you discover that, too! 

    Also, handy tip: make sure you bookmark our  so you can easily find your way back here. 

    Please join me in giving a hearty welcome to our newest members: @ALEESHA G, @AlishaH, @Ana Cristina Guilhoto, @Aubrey.Licht, @Beverly Allen, @Candy leal, @Carolyn Walker, @Daphne, @Donald louderback, @eman omar, @Fyreii, @Iesha, @Jill Mink Kaller, @Joan Sirven, @Kdavis, @Ky Nurse, @Lisa Marie, @LiveFreeOrDie, @Marina, @Michele Smith, @MizWheezie, @Molly325, @Nanika, @Olivia26, @Pamela J, @RoxannSt, @SaraMarie, @Saundra, @Shannon P., @Tara Houser, @Veronica P., @Yvette

  • LK

    Welcome everyone!   

    Glad you are here!  Well, I'm sorry you have to be here, but you will be glad you found these forums and the wonderful people who give support, advice and encouragement here! 

    I have adult-onset asthma and had come to the erroneous conclusion that no one else had persistent asthma the way I do.  Before I joined the AAFA forums it was discouraging to meet others who said they had asthma and all they needed to breath better was a puff or two of their inhaler.  I'm on several maintenance meds for my asthma and have many triggers.  Come to find out (after reading posts on these forums) that others do in fact have persistent asthma, too!  What a relief! 

    Hope you find support, ideas for life with asthma and encouragement here.  How are you dealing with your asthma?

    Again, welcome!!

  • Pljohns

    Welcome everyone!  Sorry you have do find us but glad to have you here.  You will find this is the most amazing group of people with experiences, suggestions and most of all SUPPORT.  We actually DO know what it's like to live like we have to.  I'm like Lisa-used to get really upset with people who had asthma but all they needed was a puff a day of some med and they never had any trouble-until they wanted a day off from work that is-and here I was, struggling just to get by.  i thought no one knew what it was like-until I found this forum almost a year ago.  With the support and encouragement here from the members, I will now do a neb in front of whoever is around me instead of hiding in the bathroom stall or worse yet, not doing it at all, not being an advocate for myself AT ALL and now, I have a new job, new boss that totally gets it and has removed EVERYTHING from the clinic that has any smell at all and here I sit with a mask on to try and keep from getting the flu.  A  year ago, there is no way i would have done that but I have come to realize-due in large part from the wonderful people here-that I have to advocate for myself and I have to take care of myself-no one else is going to do it for me.

    Jump right in on existing threads or start new ones-we welcome any topic and are thrilled to have new members.  WELCOME AGAIN

  • Lisa Marie

    Thank you for the warm welcome!  I look forward to being part of the community and learning more about allergies

  • Vnes
    Kathy P posted:
    Vnes posted:

    Can anyone please advise me on what I can do to stop the pounds from adding up constantly taking steroids and getting shots for uncontrolled asthma.

    @Vnes - steroids can be an issue for weight gain. It sounds like your asthma is not under control so you need steroids often? 

    I know when I have to take steroids, I'm always eating! Which is not good! And when my asthma is flared I can't exercise. Both contribute to weight gain. 

    Are you working with your doctor to try to get your asthma under better control?

    Yes, I am working with my Doctors trying to get it under control. I took allergy tests, I think I may need to take allergy food test now. I don’t eat much, never eat all my food. I walk a lot at work I am at a loss on what to do about weight gain. My asthma triggers are allergies, exercise. 

  • MizWheezie

    @Pljohns – I just found this site, but I'm glad to be in the company of people who really, truly "get it."

    As you said, nobody understands having to deal with asthma, unless they have it too. 

    I get so frustrated trying to explain to people that I'm not "lazy," but that I'm just exhausted and worn out from struggling to breathe – If I'm up at 7:00 AM, then by 3:00 PM, I'm pretty much tired and completely out of energy.

    I've almost become a recluse this winter, because I'm trying to avoid catching the flu – I'm terrified of what this strain could do to us asthma sufferers. 

    It's nice to have a place to come and vent, and not feel as though you're all alone. 

     

  • K8sMom2002

    Vnes, I know we've had other members have a similar problem to you. For them, steroids can make them really gain weight. Hugs on the uncontrolled asthma. 

    Have you checked out other folks' discussions about ? What allergens trigger your asthma? Feel free to start a about anything that's on your mind!

    To post a new topic from your computer, click the green "post" button on the top right of your screen.  From your phone, tap on the 3 bars that are on the top left and then tap on post. 

    MizWheezie, you are NOT alone! That's the great thing about the AAFA forums. We can all reach out and be there for one another. 

    And I know what you mean about feeling exhausted. There are days when putting one foot in front of the other is a struggle. Having someone tell you it's just being lazy would be one. last. thing.

  • MizWheezie

    Yes! – One. Last. Thing. (LOL)

    Sometimes Hubby will hear me going "Whew!" – and he'll ask "What's the matter?"

    When I reply, "Oh, I'm just tired" -  He'll say: "You're always tired."

    …and I'll say DUH!" 

  • Vnes

    Thanks for all the hugs and information. I really appreciate it. I will look at that forum for advice.

  • Vnes

    Yes I often get that your just lazy look especially at work. People just don’t understand the struggle. Often I look like in well but my lungs feel another way. I’m far from lazy just can’t do much simple walk to bathroom or shower and I need a treatment. 

  • Pljohns

    Vines/MIZWHEEZIE-you are both so right-they just DON'T get it. I feel good when I come to work but by the end of the day, I'm worn out and most of the time fall asleep in my recliner after dinner.  People who don't have to deal with what we do, just don't understand and most people who can get by with just a puff of their meds and that's it doen't get it either.  I wish I could get by with something as easy as just 1 puff and nothing else but most of us here can't.  We're certainly not lazy and most of us would give anything to be able to do more than we can but it's what we've been dealt and we just do the best we can with it. 

  • SaraMarie

    Thank You for the welcome. I am finding very valuable information as I wasjust diagnosed and want to manage my health.SaraMarieOn Wed, Feb 21, 2018 at 11:28 AM Asthma and Allergy Foundation of America <support@aafa.org> wrote:

  • Megan Roberts

    @SaraMarie although I'm sorry you need us, I'm so glad you found us. A whole world of information and support is here for you. Welcome.