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Quality of Life….

Being a mom of a child who is medically complicated or having a chronic illness yourself is tough. There are decisions that we make that are not easy. There are times we have to keep our children or ourselves from doing the things they/we love because they/we need a break or it just isn't a wise idea at the time.

Today, I had to make a decision to let Rebekah go somewhere even though I know she will pay for it later. And for me it comes down to quality of life. She already misses a lot, at times she just wants to be a typical teenager.

Neil took Bekah and Josh to a local county fair tonight. She got to hang out in the barn with the horses. She would sleep there if she was allowed. Now, she is watching our Pastor during the school bus crash derby. Yep, you read that right. Our youth decorated a school bus, and our Pastor is driving it in a derby. And my daughter is loving every minute of it. She needed this tonight. 

She will come home and sleep. She will get a shower in the morning and I will reaccess her port. She had to deaccess because she was sweating her dressing off. But all of it will be worth it for her. 

What are some things that you allow yourself to "indulge" in so YOU can be a "typical" adult, knowing there may be consequences later?

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  • Shea

    I totally get the need to get out any be social and feel normal.

    How did Bekah end up doing?

    Im trying to think if something I did recently for quality of life… I did go to my parents annual 4th of july where they lit off a bunch of fireworks — I could have not went and played it really safe and stayed home (last year I had a bad attack), but instead I had my new mask, my parents knew I was nervous about the smoke and had the fireworks lit off at greater distance from the watching area, and I had a portable fan be me to help keep smoke away and keep me cool with the mask. I had my portable neb this year too.

    I was not going to try the 4th with nothing and end in a bad attack like the prior 4th, inhalers not working and my dad needing to rush me back to my house for my neb as I gasped go breathe)… but I just wasnt ready to give up yet either. I needed to try again with more tools this time. And those things really did help and I had a good time.

    So sometimes it is worth taking a small risk every now and again for important things and realizing you can do something– but not repeating something that caused a bad reaction over and over… Because that is no fun anyways. 

  • Pljohns

    Melissa-I hope Bekah did OK and I totally get needed to be a "normal" person once in a while.  I'm lucky in that I can pretty much still do things because I"m not allergic to anything and no known triggers but cold air and strong smells but the flip side of that is, I never know what is going to give me a problem.  I'm the worlds worst at flying by the seat of my pants where it comes to me.  I tend to do and over do and then pay for it later-slowing down isn't something I've gotten the hang of and doubt I ever will.

    I do think it's important to "try' to do something every once in a while to feel normal.  Even a few minutes at least makes us feel not so hampered by our illness.

  • Melissa G

    Thanks Shea and Lynn! Rebekah had an absolutely blast at the fair. She spent a lot of time with the horses. She loved watching the bus derby and even stayed a little longer to watch the first heat in the car derby.

    She is doing better than I expected this morning. She is tired and her muscles are tight, but she was able to get out of bed and get a bath so that is good. I will re-access her this afternoon and get the fluids going again. 

    I don't let Bekah do things like this often, but every now and then they are needed. It really helps her overall health. 

  • LK

    Melissa,  What a good topic!

    Glad that Bekah is doing okay.  That must be hard to make decisions as to what and what not your kids can do. 

    For me I kept trying to do everything I was doing before my asthma diagnosis and, as you can imagine, that did not improve my asthma.  So right now I have (perhaps) taken it to the other extreme.  I have cut out many things that I used to do.  

    I am trying to find new activities that do not contribute more triggers to my daily life.    In addition to just finding new activities I need to find ones that also give me more social interaction since DH isn't one to enjoy social gatherings.

    I have started going to a knitting/crocheting group at a church.  It meets a few times a month.  

  • Melissa G

    Lisa, I am glad you are finding new activities! That is so hard to do. It is nice to be able to get out and about. I don't do well when I in the house for too long, I fell like the walls are closing in. 

  • LK
    Melissa G posted:

    I don't do well when I in the house for too long, I fell like the walls are closing in. 

    I hear you on that!    

  • LK

    Have also done a fair bit of genealogy research but there again, it is more of a solitary endeavor.  

  • Shea

    I am glad Bekah had a good time and no big bad impact on her health, that is great! 

    Pljohns, I definitely get caught up in the running around… I did too much myself today. I feel a lot of tightness in my upper back on days that I overdo it and stomach issues and fatigue all are adding up today… But its just always stuff needs to be done…

    Lisa, I totally understand finding that balance and wondering, am I limiting too much?..( and then you overdo something and do have a problem as a result and kick yourself for it)– it is all part of finding your feet after major life/health changes. It took me a long time to figure out all my triggers and then I STILL get surprised when I get flared up (especially after being around people who own lots of cats– I still get surprised at how hard it can hit me). Then, after I do well for a long time and am careful, I will get sloppy and BAM– flate up and then struggle to get back where I started from… Which is not where I want to be ( I want to get lower on the prednisone that I take daily) but it is a     s  l  o  w     process for me… I am inching on feeling better and think I might be able to lower then all of a sudden I am wheezing again and overdid my day and thankful I didnt try to go down yet– but I have been having more good days than bad lately and very few big flare-ups so that is a good sign that I am getting the hang of things.

  • LK

    Shea,  Well said!!  Exactly what I have been thinking and doing.  Some days I think "Hey, not doing too badly!  Maybe I can do some of the things I used to do!"  Then I have a flare and there I am surprised at myself for being surprised at my wheezing and coughing and shortness of breath.

    That is such good news that you are having more good days than bad ones lately!!  Especially that you are having fewer large flares!!    Go Shea!!    Go Shea!!    Go Shea!!  Good for you for figuring it out! 

  • Melissa G

    Shea you are doing amazing! 

    We are getting more aggressive with Bekah's medical treatment so at time I do need to push and see what she can handle. We have gotten her heart rate down and that has been a huge improvement in her overall feeling better. 

  • Pljohns

    Shea-I totally agree with what was said-you are doing AMAZING.  You have done what you have to for improvement in your own health and that is something I am struggling iwth heavily right now.  

    I’ve taken sort of OK care of myself over the last many, many years and just decided it’s time to deal with it and take care of whatever I have to do to make sure I’m as healthy as I can be.  Three trips through the dentist-crown and filling later-I will be done there just over another week;  been needing to go to derm for a year or so-started topical chemo last Wed and go back in 2 weeks to see derm and by the end of Aug will be done there; went to new doc last week, had TONS of blood work done (like 8 vials of blood) and almost everything came back good so am waiting to see what I need to do to take care of the new issues and by the end of Sept will be done with follows up mammo (hope everything comes out fine there), follow up with pulmo and i have a growing list of things to discuss with him and last new visit with new GYN.  Hopefully by the end of Sept, I’ll know what new  issues I have and what i need to do to take care of them.  

    I’m a HUGE proponent of quality of life over quantity and having quality in our lives begins with doing everything we can to take care of ourselves-even if it makes family member angry and even if they don’t understand, we have to do what’s right for us.

  • Melissa G

    Why do we women wait to go to the doctor's? I don't wait when I am sick but like for physicals and check-ups? I always make everyone else a priority but me I will put things off forever!

    Lynn, very happy to hear that you have started taking of yourself and have been going to the doctors. I hope everything works out well with topical chemo. I always dread dental work…

  • LK
    Melissa G posted:

    Why do we women wait to go to the doctor's? I don't wait when I am sick but like for physicals and check-ups? I always make everyone else a priority but me I will put things off forever!

    Good question, Melissa!!  Must be in our genes!  

  • Pljohns

    I think we wait because we see everything else that needs to be done and we take care of everyone else and don't make time for ourselves.

  • Melissa G
    Pljohns posted:

    I think we wait because we see everything else that needs to be done and we take care of everyone else and don't make time for ourselves.

    EXACTLY!  

  • Melissa G

    Bekah wants to volunteer at our local library.  At first I was like…what?! But then I started thinking, why can't she? So she is going to fill out an application and we will turn it in tomorrow. If she gets the "job", I can hang out a few times to make sure she will be ok…the library is only 5 min from our house and next to the police station and fire house…she will be well cared for…

  • Pljohns

    Melissa-that's great that she wants to venture out and it's so close to your house. I know how scary that must be for you though.

  • Brenda Silvia-Torma

    Melissa, that's awesome that she wants to volunteer! Is it formal application process with an interview? 

    She will be great it!!