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What things have you let go of? What have you grabbed hold of?

Shadowcat and LK got me thinking about how life changes after an asthma diagnosis. Maybe it's not all at once at first. But for me it happened after that first really bad exacerbation, you know, the time you totally get that you can't take your lungs and your life for granted anymore?

I used to run in college, and I never thought a thing about running by myself. I was never very fast, but I had stamina and liked to pit myself against myself, you know? But my asthma got real to me when my doc advised me, very casually, "Of course, you know, don't do strenuous exercise by yourself."

At the time, I was really struggling just to draw a good breath in, and exercise was the last thing on my mind. But it's one of those things that sneaks up on you. 

Asthma is a grieving process, and I've had to learn to grieve the things I've let go of. But the things I am grabbing onto — my family, my friends, my LIFE — are really worth the sacrifice. 

What things have changed in your life? How have your expectations changed? What good things are you grabbing onto as you're letting go of other things?

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  • Pljohns

    Cynthia-GREAT thread!!!  I totally agree with you (actually, you are the one that made me realize it) that asthma is a grieving process. I’d never thought about that until you posted ina while back and I began to think about it.  You are so wise with so many things and we are fortunate to have you for a moderator-thank you for everything you do for us!!!

    Now-what has changed for me-for me, I was very active in martial arts-earned my black belt and had my sights set on a second degree one when asthma hit me.  I ultimately had to give it up-I could and still can do weapons, but can’t spar(or fight) any more and that is a big part of it.  No way to get a second degree without it.  When I found myself spending over half the class sitting on the sidelines becuase I couldn’t breathe or with SEVERE muscle cramps (like from my toes to my hip one time-at the SAME TIME) I knew I had to quit.  Because of the type of asthma I have, and just as my doc told me would happen, one by one, my meds began to fail and my lungs no longer tolerated inhaler.  I found myself having to carry a neb all the time-and believe me, your purse has to be HUGE to carry one. I told DH if my purses got any larger, I was just going to skip them and go straight for carry on luggage on wheels!  Because of reactions to meds, the only thing I can take is a pain COPD med-nebulizer only-and a pain becuase of how it has to be stored.  It robbed me of being able to throw things in a suitcase and go-now I have to make sure the hotel has a full size refrig (I don’t trust dorm size-they don’t get cold enough for my meds), a pain of traveling with 70+ vials of medicine for a 4 day trip (yep-TSA and I got on a first name basis).  

    I was embarrassed for anyone to know I had asthma-to the point I either didn’t do nebs when I needed them because I didn’t want anyone to see me or I would go hide in the bathroom stall to do it.  The low point-I finally had talked myself into doing nebs in public and was at the mall with my DS-both in elementary/middle school-needed a neb and sat in the food court to do it only to have some jerk call the mall cops about “a lady smoking a crack pipe”-I was humiliated, the mall cops thought it was the funniest thing ever and I let the poor sap have it.  After that, I was back in the bathroom doing them or not doing them at all.  Asthma robbed me of taking care of myself because I was too embarrassed for anyone to see me.  It took a LONG time to get over that (and with the help of a lot of people here) and just when I thought I was over it, my current boss decided to be a jerk and I tend to hide again.  I feel like a freak so it has robbed me of my self esteem.

    My expectations now-to be a better advocate for myself, to take care of myself and do what I can to help my family understand my like now.  My parents won’t even acknowledge I have asthma (it’s adult onset)-my Dad thinks I should just wean off my meds and then I won’t need them any more.  My MIL introduces me as “Lynn the asmatic” and my company will NOT get on board scent free policies.  I hope one day to have a normal size purse again and be able to just go out without having to worry that I’m going to need a neb and get laughed at but my expectation is that I can be assertive enough if I am.

    What good things am I hanging on to-THIS FORUM is the best thing hands down-people that really, truly do understand what it’s like.  I come here to give and receive support like no one else can give.  Dh and DS’ try to understand but they can’t totally relate because they don’t have asthma.  I’m thankful now that I’ve been able to back off of some of my meds-with a price-my lungs are more twitchy without it-but I hate being stuck in the bathroom with a neb multiple times every day and I”m hanging on to the hope that I can keep it up. I hang onto the good days that I can breathe and try not to think about the things I can’t do but try to focus not he things I can.  Life is changes and this is yet another speed bump in the road of change.

  • dory2005

    Cynthia, Love this thread!! 

    Because I've been asthmatic most of my life, I really thought I had a handle on it. I'd have my flares, steroid bursts, antibiotics, etc. I've been on Advair 500/50 for years, theophylline, Accolate, albuterol, etc. I knew the drill. Then in September 2016, our area was under a wild fire threat, and it lasted weeks. I started having more severe flares that the steroids weren't helping. Towards the end of September, I went to my pulmo after work, and he immediately put me in the hospital because I wasn't moving any air in my lower lungs (I had atelectasis in both lower lungs, and unfortunately,  I still have mild atelectasis in both lower lobes). He diagnosed me with severe persistent asthma and after four days, I was released. I guess I was in denial because I thought it's just asthma, but fast forward to February, and I was again put in the hospital for a week, and this time, I was on oxygen and a heart monitor for tachycardia due to steroids and neb treatments every 2-3 hours. I also developed steroid-induced diabetes as a result of the massive doses of steroids that I needed to survive, and also steroid-induced hypertension and osteopenia (I broke my shoulder in three places by falling in September 2017). All by the age of 44. I'll never forget when my dad saw me after that second hospital stay, he looked at me in shock and ask what had happened to my face. I'd developed the lovely moon face to such an extent that I really didn't even recognize myself. It was a low blow to my vanity, I guess. I haven't been to the movies in over a year because my immune system is pretty low (steroids), and I'm afraid of catching something.

    As a teacher, I am pretty OCD about not touching things and sanitizing my hands every time I touch any door knob, etc. I have a *bubble* that the kids know they can't enter because I don't want their germs. I carry my portable neb with me every where I go, and I am able to do treatments in my classroom or workroom during my planning, lunch and after school. I used to be so embarrassed about using my neb around people, but I got over that quickly when I got to the point that I couldn't talk and breathe, and I stopped putting my health at risk to make people more *comfortable.* I simply don't care what they think anymore because I know what I can and can't do. That includes field trips, outside duty, etc. I used to be so worried about what my administrators and colleagues would say, but after this past year, I made a conscious choice to put my health first before anything. It's not easy, but it's so important to get to the point where you are able to advocate for yourself. Believe me, it took me awhile to get on board with my drs, who really have been great. I have an amazing team of doctors (pulmo, allergist, and PCP), who have advocated for me. The pulmo and allergist worked together to get me on Nucala, and I started it in October 2017.

    Nucala has been life changing for me. I have been able to see such positive results, and even though I still have severe flares, I have been able to avoid being hospitalized for them since starting it.

    Lynn was right about the grieving process. There are things that we used to do as a family that I just can't do anymore. Visiting the local zoo or parks aren't in the cards for me anymore due to triggers (I'm pretty much allergic to being outside: trees, grass, animal dander, etc.), but we try to do things that won't trigger me. DS and I love to play cards and watch movies together (so thankful for Netflix!). We like to go out to dinner as a family, etc. I think that for me, it was hard to realize that I couldn't do all the things with my youngest that I did with my older two kids. We went to the zoo or our local amusement park often, and we went to the beach at least 2-3 times a year. I miss going to the beach the most, and I'm hoping that we will be able to go in the next few years, but I am also not going to push myself. I did that this summer while we were on vacation, and that didn't work out very well. So it's a learning process. 

    I am so thankful for this forum!! It has been so great to be able to talk to other people who understand where you are because they are there, too! I'm also so thankful for the Nucala injection and the hope that I will continue to improve.  

     

     

  • K8sMom2002

    Lynn and Dory, I love your thoughtful, honest posts … I see such growth in them! You both have come so far.

    Lynn, it's amazing to think that the woman I "know" through these forums would ever put her health behind the needs of others. You're so strong now and you take care of yourself and stand up for yourself! And can I say that I am in AWE of your Excel spreadsheets?!

    Dory, it has to be hard to compare what you could do for your older kiddos that you can't for your younger one … what traditions have you developed with your youngest to take the place of that?

    And hugs on the beach … could it be that the temperature or the humidity from the time of year could be part of it? I know that I don't do so well in the heat of the summer, but I do much better when it's cooler. This last beach trip, it was cloudy and overcast, but my lungs loved it for a change!

  • dory2005

    Cynthia, Yes, when we go to the beach in the summer, I have a harder time because of the humidity and heat. When we go in the fall, it's perfect. I'm hoping that in the next few years, we will be able to go during fall break or spring break. It's better for my lungs.    With my youngest, my DH and I have made it a priority to do family vacations every summer. We used to go to the beach and some other trip, but the last two years, we have had to do closer to home trips. One of our favorites is visiting a local resort hotel that has an indoor waterpark. I can't handle the chlorine too long, but there's also bowling, arcades, indoor rock climbing, etc., so DS loves it. We are going for three days during fall break, and it's a nice break. 

    By the way,  to Lynn on the Excel spreadsheets! I've starting entering my data in one, and found patterns that I didn't realize! Thanks, Lynn for the great idea!! 

  • LK

    Cynthia,  What a great idea for a topic!!  I learned from you and others here that it is a grieving process that sometimes starts all over again.  I agree with Lynn, "You are so wise with so many things and we are fortunate to have you for a moderator-thank you for everything you do for us!!!"

    What things have changed in my life?  - Well, when I was first diagnosed almost 6 years ago the doctor told me that I should be able to keep doing what I had been doing – mainly riding showing horses.  I didn't know enough about my asthma and triggers to realize that "avoiding my triggers" meant truly avoiding them.  I also didn't realize how many triggers I have.  Many of those triggers are in horse barns and at shows so I finally realized this past winter, after a long asthma flare last fall, that I had to give up all things horses - grooming, training on the ground and from the saddle, riding, showing.  Not only do I miss the interactions with the horses themselves, I miss the social interaction/camaraderie at the barn and at horse shows where I would see my "horse" friends.  We would cheer each other on and console each other when, as horses do, our horse had humbled us again.  Horses have a way of doing that.     So I have chosen to give up something I loved doing (horses) in order to breathe better and be able to enjoy, the Good Lord willing, many years to come with my family.

    How have my expectations changed?  - One of the hardest things for me to come to terms with is that asthma is not something from which a body "heals" and gets back to his/her old normal life.  We have to learn how to have a new "normal" life.  I have had numerous times in over the years where I have been injured or been very ill and have always been able to look forward to knowing that at the end of the long or short road to recovery there is the "promise" of being back to my old self or as close as possible.  Just had to keep working at getting better and sooner or later the worst was behind me.  With asthma it is a whole new ballgame in that regard.  My expectations used to be that I could accomplish most things that I set my mind to doing.  Now I have to (and this is a major work in progress) live with the fact that on many days I do not have the breath nor stamina to do things which used to be so easy to do.  I thank God for his mercies being new every morning.

    What good things am I grabbing onto as I'm letting go of other things? - Now this is really a good question!!  I am still trying to find things I can do that will not trigger my asthma.  It is very disheartening to think you have found a new task/hobby/ activity and then discover that your asthma triggers are inherent in the activity and you have to give it up.  Lately I am doing some loom knitting and just recently have been trying my hand at regular knitting with needles.

    My best new activity is reading and posting on these forums.  I am so thankful to the Good Lord for all of you here who keep me going, offer hugs, lend an ear when I need consoling and are ever-ready to offer support and encouragement.

  • Pljohns

    Dory- on finding some trends from the excel sheet!  I have been able to find some as well-

  • Shadowcat04

    Cynthia- Thanks for starting this topic. Reading the different responses, has given me a lot of new perspective. Admittedly, every day I think maybe today the asthma cough will be gone and the breathing will be clear and this will be gone because maybe I don't really have asthma. Since I am on 4 weeks now, with only minor improvement, maybe this is real. 

    I'm glad you and others mentioned grieving because I think I am in denial and grieving. I am trying to not sink too deep into depression which is easy for me since I already have depression and anxiety from PTSD, which I am in treatment for.  I guess I know what we'll be talking about at my next appt. for that. 

    What things are changing in my life? I am not searching all the stores for cheap school supplies for my classroom- I just don't have the energy. It is hard to be missing this opportunity. I have not been doing anything with friends or family that I don't have to for now. Just taking care of my kids and doing a few family things is exhausting me. This is hard, but necessary right now. I'm not sure about the two things I have planned- 4 days at the beach with my 2 kids at my parents house- my parents are older and need some care. My husband can't come to help me and buffer me. The other is a trip to our family cabin in the woods- only 3 days. Just my kids and husband, I don't have allergies that I know of, but it is more work. 

    How have my expectations changed? I expect that everywhere I walk it'll take longer because I walk slower and have to stop to cough and breathe. I need to take elevators, if possible. I need time to use nebulizer in the morning and before bed. I am not going to be better in the near future. I may not be able to do everything I usually do at the start of the school year (that is hard to type, I have tears running down my face). I am very proud of what I do as a teacher and I am a very private person at school. 

    What good things am I grabbing onto as I let go of others? I am not sure, yet. Finding this forum is a definite plus. I am trying to embrace the relaxing part of summer on the days I don't have to drive my kids around. I cough less when I am resting. My cats bring me happiness and calmness.  Thank goodness I am not allergic to them- I would have to get shots or something because they are part of my depression and anxiety treatment. They do not approve of the coughing or nebulizer, though.

  • LK

    Shadowcat,  Many hugs  for you.  I have lost track of how many times my posts on here have been drowned by my tears as I type.  It is so hard to give up doing things we love to do because of our asthma.  Please know that it does get better.  

  • Marie E Natzke

    Hi everyone great responses to a tough question.

    for me I at times still grieve for the job I had to walk away from because of someone's selfish act that triggered my dormant asthma. I say it this way because even though I was born with asthma I had gone 46 years between asthma attacks. it really angers me that with all the information we have at the touch of a mouse people seem to be getting more ignorant than more intelligent. More compassionate, more inclusive of all people no matter what their disabilities are.  And more importantly to be believed when you tell someone I can't be around etc…I can't eat etc because I'm allergic. If I want to travel I can no longer fly on planes. I worry about traveling on Amtrack. I can't drive long distances so what's left??

    What am I holding onto?

    My asthma attack will be 5 years this coming September. As time has gone on I can work now in the yard without a mask. But have to work early in the morning or later in the evening to avoid the hot humid weather. My family and friends and like everyone else has said this forum. Here we can vent without someone giving us a hard time by telling us were not being reasonable. 

     

  • Shea

    I have had to let go of a lot since being disgnosed with churg-strauss syndrome 6 years ago (a chronic allergic disease involving asthma and eosinophilluc inflammation in all the major organs triggered by allergen exposure). Avoidance of allergens has been huge, and I had to let go of pets I was allergic to, going to family and friends home who own them, I had to let go of my work and get on disability to recover, I had to let go of lifelong personality traits like putting myself last and others first. I grabbed onto myself and my son and motherhood. I actually started asking myself how I feel and caring. And doing something. I can hear the seed of my inner voice coming out and growing. I let go of parasitic relationships from people I thought cared about me but were only using me. I grabbed onto safe space and my parents who became safe people and helped me on my new path toward health. My son has been a driving force, allowing me to both put someone elses needs above my needs but because he needs ME so much , making taking care of my needs part of putting his first– I needed that, I wasn't strong enough without that and because we are so united in our life– we need to eat healthy and exercise and enrich our minds and find safe friends and a home and community together– he has been my savior. I have grabbed ahold of allergy aware co-oops, virtual public school program, a new manufactured home for us, a cook-at-home lifestyle, crafting, and our lizard pets which we are not allergic to. I have let go of my ex/sons father who I used to live with who wouldnt rehome the cats and dog when the doctors told me not to live with them as I was allergic and my disease was life-threatening, and my son is also allergic. I have grabbed onto this wonderful community of people on this forum who have been with me on this difficult journey. 

  • Melissa G

    Since I was diagnosed with degenerative disk disease, I have let go of being able to let go of getting so much done in one day. I can't clean like I use to. If I do too much my neck and shoulders hurt and I get huge knots. so not worth it. So I have learned to pace myself and spread things out a bit. 

    As for my asthma, realizing I am not super woman and that I need my medication. I was actually wheezing last night, which I typically don't do. All this rain is killing me. 

    marie, I have to go out in the early morning or late evening too. The humidity kills me. It is like I am being suffocated. Horrible feeling. 

    Shea, you are absolutely amazing and such a wonderful advocate for yourself and Tommy! 

    Shadowcat04, have you check out  for deals on back to school supplies?  i don't always get to make it to the store to get the great deals but have found some amazing ones on amazon. 

  • dory2005

    Shea,  You are amazing! The strength that you have to do all that you deal with on a daily basis, is such an inspiration to me. Tommy is such a lucky little boy to have you as his mother!

    Melissa, I completely understand the need to pace yourself. I can't imagine how hard it must be to juggle everything that you do and trying to take care of yourself. Hugs!

  • Shea

    Thank you Melissa and Dory. Both if you are such amazing mothers as well and hearing your stories (both triumphs and setbacks and just daily experiences with asthma) is so relatable and makes me feel not as alone dealing with similar situations myself. 

    Marie, I totally get frustrated with the ignorance of asthma/allergy triggers and the difficulty that results in public situations– especially travel (airplanes, even cabs now are often required to take "service"animals (with all the lack of regulations and misuse that comes with that title). So.. I am with ya… Seeking more compassion and awareness and rights.

  • Melissa G
    Shea posted:

    Thank you Melissa and Dory. Both if you are such amazing mothers as well and hearing your stories (both triumphs and setbacks and just daily experiences with asthma) is so relatable and makes me feel not as alone dealing with similar situations myself. 

    I agree! I definitely don't feel so alone anymore! 

  • K8sMom2002

    I have to say, you guys are absolutely amazing! I love the way you have overcome so many things and have learned to advocate for yourselves. That's so important, and it teaches me as well!

    Marie, I agree … I'm hoping awareness will tap into people's natural compassion, and that as people who may not think about things see others who do, that they will learn and become more aware and more inclusive.

  • Kathy P

    I definitely get frustrated with not being able to be spontaneous – having to go through that mental checklist of what if any precautions I need and what potential triggers am I going to run into. I've gotten pretty good at quickly assessing a situation and deciding if it's worth the effort. 

  • dory2005

    Agreed, Kathy and Lisa! A colleague invited me over for a cookout before school starts, and I had to decline because 1) I'm allergic to dogs (she has one) and 2) cookouts are out for me (any kind of smoke sets me off) and 3) being outdoors right now is just out of the question due to heat and allergens. I hate it, but I'm feeling better and do not want to have any relapses. 

  • LK

    Hard to do, I know, but the wisest course of action, Dory.  Good for you for doing what you need to do.  

    My dad uses the term "delayed gratification" when our kids were young to explain to them how by denying themselves a small thing now would lead to a bigger "payoff" later.  For example:  He would give them a few dollars for a birthday or something and tell them that if they still had those dollars when he next asked, maybe in a month or two, they would get a few more dollars.  I have started thinking of our need to decline some activities now in order to breathe better now and later as "delayed gratification".  May make it easier for me to make some decisions!  

  • Pljohns

    I totally agree with you –  Dory sorry you had to decline but probably better for you in the long run so you will be better before school starts.

    I’m not too good at doing this right now-most of my problem is saying no to people when I know I need to rest or no because I know it will absolutely wear me out-I still tend to say yes and pay the price for it.  It’s a lesson I have no learned yet.

  • LK

    Lynn,  Wish I could say I am a pro at this but, as I'm sure all of you know, it is so much easier to type out how I should handle things than it is for me to remember the plan when I am in the midst of "life"!   

    By keeping each other accountable, we will all get better at it!!!  

  • Pljohns

    Yes we will-with each other’s support and understanding when we don’t do what we know we should-we’ll get there.  I KNOW what I need to do, just awful at actually doing it.  But, if I look back a year ago, I wouldn’t do a neb when I needed it (still hesitant about that), wouldn’t start pred or levabuterol when I needed to and flatly wouldn’t tell ANYONE that I had asthma and needed to slow down.  Still not good at that, but it’s a work in progress.

  • Brenda Silvia-Torma

    Agree with everything stated above! (lol) My biggest problem is the lack of spontaneity in my life…I've had to put conditions on whether or not I can do something, and I really hate that I have to do that. It's almost the end of the summer and I realized that I've only been to the pool once and it's because of the air quality. I need to teach my DD how to tread water for her upcoming week of swimming summer camp (needs to be able to do it for 1 minute). Today I decided that I'm going to go to the pool with her this week and wear my mask while I'm in the pool. I figure as long as I don't get splashed, I'll be okay. 

  • K8sMom2002

    Brenda, what a great plan! I hope the swimming works! 

    Spontaneity — yep, that's a tough one to give up on, but I like the delayed gratification comparison, Lisa. 

    Lynn, you're an inspiration to me — how much you've grown, how brave you've become. And Shea, too — yes, toxic people who won't help us are definitely a thing to give up.

    I think one thing I've gained is a boat load of empathy for people, no matter what they are dealing with. It doesn't matter whether it's diabetes or asthma or any other chronic medical condition. People managing a chronic health issue have similar challenges: lots of doctor's visits, changes in their abilities to do things they were able to do, financial considerations, side effects … the list goes on. I've BTDT, so I totally get it.

    I've also gained real skills that help my family members out. For instance, when my sister was going through a very tough battle for her DH's life, I knew what her DH's docs were saying, what they meant. I could translate and be a guide for her during a scary, scary time.

    And now I'm so pleased that she has been that same sort of person for OTHER people … she's helped them like I helped her. I love it when people pay it forward!