tag:blogger.com,1999:blog-25073771.post4994495943789730342..comments2023-11-05T04:05:03.588-08:00Comments on A Chronic Dose | A blog about chronic illness, healthcare, and writing.: What's Guilt Got To Do With It?Lauriehttp://www.blogger.com/profile/10392908564921877962noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-25073771.post-62389166565518589962011-03-09T14:47:45.149-08:002011-03-09T14:47:45.149-08:00"But now that she is here and growing more al..."But now that she is here and growing more alert and aware by the day, there is yet another permutation of guilt, because I am starting to see the ways in which my illness affects her. So far, the impact is minor, but I hate it when, for example, I am having my daily chest physiotherapy and she is in her bouncy chair next to me and needs me and I cannot give her what she wants. She doesn’t understand why, and I hope she is not confused as to why I leave her there. This is just one small example, and I know intellectually she is fine, but in the moment I hate it so much."<br /><br />This made me cry so hard...that is EXACTLY an issue I've encountered. I'm trying so hard not to feel guilty when I'm hacking it up, trying to breathe so I can do my best to tend to her needs. I hope it doesn't affect Hannah long term. I worry too.Genevievehttps://www.blogger.com/profile/03224168980608089968noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-43750461745186203302011-03-09T14:45:14.818-08:002011-03-09T14:45:14.818-08:00Wow, I cried reading this post. I struggle being t...Wow, I cried reading this post. I struggle being there for my friends when I'm just doing my best to be a wonderful Mother to my 7 month old daughter and wife to my husband. We've lost so many friends due to my illness. Some people aren't as sensitive as they let on. I actually had a couple tell us that they were exhausted with reading my facebook statuses over the last 7 months because I had so many complications after the birth of my daughter that I woud update from the hospital. I spent every month in the hospital since Hannah was born.<br /><br />3 invasive abdominal surgeries & 3 blood transfusions with 2 months of giving birth, abscess after abscess, hematoma, seroma, Total abdominal hysterectomy, CDIFF 3x within 2 months and now recovering from a bad Bronchiectasis flareup with bronchitis. Spitting up blood and green plugs, I sound like a barking seal. You know the drill.<br /><br />So lucky to be alive Laurie, so thankful to have my beautiful daughter. The struggle? Medicaid, insurance...disjointed care and Doctors who pass me off because they tell me..."you're too complex". Then they get angry because I'm frustrated and then I'm stereotyped as an anxiety case for defending and advocating for better care.<br /><br />I know this guilt. Guilt even when I'm struggling to breathe, doing my vest and nebulizer and trying to interact like other healthy mothers with their infant. I lay awake and cry at night because I wish lung disease would become a distant memory. I just want to be a normal Mommy!Genevievehttps://www.blogger.com/profile/03224168980608089968noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-20733468531722213452011-01-31T14:48:28.209-08:002011-01-31T14:48:28.209-08:00Laurie I definitely relate to the feeling of guilt...Laurie I definitely relate to the feeling of guilt that comes along with a chronic illness. Guilt is something I constantly struggle with.<br /><br />I've been living with a chronic illness since the age of 7 and now at 24 that guilt is much more prevalent. I have guilt about that fact that my husband brings home the majority of the income because of my inability to have a "normal" job. I feel guilt about the days when housework doesn't get done because of my low energy. And I feel guilt when I have to rely on others. <br /><br />I think guilt and chronic illness go hand in hand but I'm working on it. I try to remind myself that I am much more than what I do.Ashleyhttp://www.thyroidresistance.com/noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-51283956688800670282011-01-22T19:44:37.401-08:002011-01-22T19:44:37.401-08:00Fear is not of God.
You have to have faith that ...Fear is not of God. <br /><br />You have to have faith that the Lord will work everything for your good even though i the natural it may seem hopeless.<br /><br />Your job is to stay healthy mentally, physically and emotionally. The enemy of God will use your "Fear" to keep you feeling liek your ion bondage.<br /><br />Everything will work out. You have to remain positive.Sistergirlhttps://www.blogger.com/profile/15953555977790444949noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-85809050200393786562011-01-10T20:35:49.669-08:002011-01-10T20:35:49.669-08:00This made me realize (which I have also been think...This made me realize (which I have also been thinking about a lot), why most of my friends are not my age. Because once many get close, I lose them when my illness gets in the way too much or dramatically worse. I feel guilty over lost time in high school, which was 4.5 years ago. My close friends are people closer to my parents' ages, because they realize I need that extra-ness once and awhile. Many young people who have never had chronic illness, think the world should revolve around them, EVEN when a close friend just needs an extra moment.brittahttps://www.blogger.com/profile/17364260264700856613noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-36988198720138101552011-01-10T11:32:11.904-08:002011-01-10T11:32:11.904-08:00VAF--thanks for the comments! I have totally been ...VAF--thanks for the comments! I have totally been there, wanting to cancel so I can do what she needs, but tell myself she needs me to be healthy. And then there are the times I have to cancel b/c she needs to go to the doctor, but that's another story...<br /><br />Lindsay-I think you are right on with the lessons she will learns and the positives she will gain. Speaking as the child of chronically ill parents, I definitely saw a lot growing up that helped me recognize when others are suffering or in pain and how illness can change the equation.Lauriehttps://www.blogger.com/profile/10392908564921877962noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-36549440738205765862011-01-10T11:05:37.893-08:002011-01-10T11:05:37.893-08:00Thanks so much for sharing this... I *so* totally ...Thanks so much for sharing this... I *so* totally understand what you mean. My daughter just turned two and I'm sick. I know she has already needed to miss out on things because of my chronic illness(es), but I like to stop and think about the kind of person she will grow up to be because she grew up understanding about differences, limitations, patience, and compassion. In the long run, having a sick mommy might work out to be a huge positive in her life.Lindsayhttps://www.blogger.com/profile/02947282601018898077noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-38250178922195812412011-01-10T09:54:10.801-08:002011-01-10T09:54:10.801-08:00Oh, Laurie, I know just what you mean! I often fee...Oh, Laurie, I know just what you mean! I often feel so conflicted when I'm doing my vest and nebulizer treatments and my son wants/needs me. There are some days when I am so tempted to skip them, but then I remind myself that, in the long run, it's more important for him to have a healthy mama to take care of him than to have his needs/desires met every second. <br /><br />Also, it gets better as they get older. My son has gotten used to my treatments and will play alongside me. He especially enjoys pretending to breathe through an extra neb cup that I let him play with.<br /><br />Guilt is unfortunately a big part of parenting, whether chronically ill or not. You are obviously a wonderful mother, so don't beat yourself up too much!VAFhttps://www.blogger.com/profile/08440351541843685876noreply@blogger.com