Chronic Obstructive Pulmonary Disease (COPD)

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Chronic Obstructive Pulmonary Disease (COPD)
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    Bree O'Boyle

    My Mother Lost Custody of Me Because She's Disabled

    When I was about 4 or 5 years old, my biological parents filed for divorce. At this point, they’d been married around 10 years. They got married on August 23rd, 1986, and when I watched their wedding video, it seemed like my mom was over the moon in love with my dad. It was my mom’s first marriage, but my dad had already been married and divorced once before with a son from his first marriage — my brother. I came along about five years into their marriage and — according to my aunt — after quite a bit of fertility treatment. My mom wanted me — even though she knew there was a really good chance that I would be disabled. I never knew that until recently because I was brought up on lie after lie from my dad. My mom was 25 when she got married and 29 when she had me. She was a really great mom from what I can remember. Of course, this is now that I’m an adult and have brought up years of memories from before my dad got custody. My dad is a man who is known to have a fuse shorter than I am — which is pretty damn short — and he already abandoned one child from his previous marriage. As it turns out, he had two more children we didn’t even know about. He somehow got full physical custody and joint legal custody of me — a small child with complex medical needs. He had no experience, no support, and on a good day, he was flying by the seat of his pants. My early memories of my parents are honestly a bit muddled. I remember my dad laying around a lot complaining about how tired he was and constantly falling asleep and snoring loudly during whatever movie or TV show I was trying to watch. My mom, on the other hand, was always trying to figure out things to keep me busy: books, projects, coloring, and crafts. She was the queen of being over-prepared. I often had to be in the car for hours in order to go to my medical appointments a few states away, but she would always make sure we had a car version of my favorite games. I also had this little troll tape player where she’d recorded a cassette of her reading my favorite bedtime stories. I had cassettes of some of my favorite songs too. My mom made those trips bearable for me as a small child. She also made sure I always ate the right foods, got my vitamins in, and brushed my teeth, and she would sit and do my homework with me. She’d even take the time to read my terrible handwriting so she could understand what I was trying to say. Why then, you might ask, did my dad — who never even knew my favorite color, made me a meal, or stayed awake long enough to play a game with me — get full control of me as a child? Here is the truth: My mom was disabled. You see, both my mom and I have dwarfism. My mom was on SSI most of her life. She tried to get the odd job, but her body often gave out right when she needed it most at her jobs, and then she would have to go back on SSI. However, she was completely capable of being a mom. If you ask anyone who really knew her, they’d say I could not have asked for a better mom, even though for a long time I disagreed with them. My dad had me convinced for a long time that my mom was the worst — a terrible person who had ruined my childhood and stolen my dreams. This, however, was far from the truth. The question on many people’s minds was how my dad had convinced the family court of the fantasy that my mom was a terrible parent and he could take care of me. The truth is, he didn’t have to. My mom was in her mid-30s at the time and she was on SSI. She was disabled. According to a report by the National Council on Disability, 13 percent of parents with disabilities lost custody of their children, and parents who have physical disabilities are more likely to be treated with discrimination in a divorce case where child custody is involved. 13 percent might not seem high, but it is when you are part of the 13 percent who lose their child or children simply for being disabled. Could you imagine having your entire parenting career judged solely on something completely out of your control? From what I can remember, my mom was great. She had her flaws too, but doesn’t every parent? Every year I was with her, I earned “A” grades in school. I also had no major discipline problems. As soon as my dad got custody of me, though, I was constantly in the school nurse’s office in school for one ailment or another. I was constantly sick, but honestly, I think I just missed my mom. To this day, my father is an incredibly spiteful man. Do I think he wanted to gain custody of his youngest daughter just to spite his ex-wife and potentially ruin whatever relationship we had? Yes, I do believe he would stoop that low. My dad didn’t have his own place or even a steady source of income when he was granted custody of me. He was living with his parents “temporarily” while he found something better. It was a completely inaccessible house where I didn’t even have my own bed for months. If I had been allowed to stay with my mom, I would’ve lived in a mortgage-free house, had my own bedroom, been fed a balanced diet, and been able to see my dog — who I adored more than I can say. My dad somehow managed to even take away my mom’s visitation rights not much further down the road. It started out with “supervised visitation” with my mom, but then visitation stopped altogether. My memories of my mom started to fade, and my young mind was easily twisted against her. I feel terrible about this now. She passed away last May on Mother’s Day around 8:00 a.m. She finally lost her battle with chronic obstructive pulmonary disease (COPD) and depression, and her body just shut down. I remember my mom laughing and making funny faces when I was growing up, but when I last saw her coherent, she was a shadow of her former self. She was not smiling or laughing but instead lying in a hospital bed in a local nursing home. She was not one who accepted pity, but honestly, she didn’t look like the mom I remembered. I still love my mom dearly and miss her more than words can say. I never got a chance to completely mend my relationship with her and for that, I will always be filled with regret. What I hope to bring to light is that parents with disabilities are losing their kids to less fit parents because people with disabilities are still being discriminated against in court. When I was 16, my dad allowed an infection in my leg to almost kill me, claiming I was being “overly dramatic” when “Ghostbusters-colored” goo started oozing from a hole in my leg. My mom, on the other hand, would rush me to the ER even if I twisted an ankle — which I did often as a kid — to make sure I didn’t break anything. My mom was an amazing, grade-A mom.  She was the kind of mom you make cheesy “World’s Best Mom” cards and horribly cute macaroni art for in elementary school. Instead, though, I was stuck with a man who thought that bringing a young child to his latest drunken conquest’s house was OK. My mom would’ve flipped her lid if I told her things like this, but I was young and impressionable, so I thought my parents could do no wrong. That was my mistake. I’m sorry I didn’t fight harder back then, Mom. I miss you.

    Community Voices

    Decision time

    We were told yesterday that without chemo my husband has 6 to 12 months to live. With chemo-unknown-maybe 6 months more. We have 2 weeks to make a decision. He is 80 years old with severe COPD and I'm terrified. He's leaning toward no chemo and having a better quality of life. My question to the group-how bad are the chemo Taxotere side effects?

    Community Voices

    Pain

    Hi all just need to have a quick bitch I'm struggling trying not to think when my cancer will be back(I'm told it will!) I have pinched nerves in both sides of my neck(second steroid injection due) I have copd damage to my lungs from the cancer treatment also my daughter died in 2016, from cancer.also I have chronic body pain especially in my hands it's hard to type.i take 16 tabs a day ,I'm glad I'm still here but man everything is hard work especially my breathing .I'm sorry to complain but this helped ,i also have cowdens syndrome 1 in 200 00 world wide have it, it makes you prone to many cancers. thank you. Wayne parker

    4 people are talking about this
    Community Voices
    Community Voices

    Hello and thanks for being here I really need this group and support because I feel as if im circling the drain with my chronic pain and anxiety.

    <p>Hello and thanks for being here I really need this group and support because I feel as if im circling the drain with my chronic pain and <a href="https://themighty.com/topic/anxiety/?label=anxiety" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce5f00553f33fe98d1b4" data-name="anxiety" title="anxiety" target="_blank">anxiety</a>.</p>
    2 people are talking about this
    Community Voices

    My mother keeps getting hit from every side it seems.

    I've been my mother's Caregiver for a little over 7years now. She was diagnosed with COPD and requires 24/7 home oxygen. She lives with me and my fiancé.

    She has her good and bad days as expected in anyone battling chronic illness, but in the most recent weeks her breast(both) have begun to swell. She had a mammogram earlier today and the technician sent her report in to her doctors within hours of having it done (which I'm very impressed with) ...the doctors office phoned us to let us know they found an irregularity in the right breast and want her to come in for further testing.

    I know, I know this is just standard precaution and I shouldn't worry about it until there is actually something to worry about it. It's hard though. It's hard to keep a brave face on so my mother doesn't start spin. It's hard to not spin myself. I don't want to think the worse, but after everything she's been through (COPD is just the tip of the iceberg) I find myself preparing for the worse.

    It never gets easier being a witness to someone else's pain. I don't expect it. I'm just having hard time being brave today, I guess Caregivers have their good and bad days too.

    1 person is talking about this
    Community Voices

    Airway Clearance

    Has anyone used a hand held airway clearance device like the electro flow airway clearance system or something similar? If so did you like it/ would you change anything? I’m currently looking into designing a better product for it for my research class in school because I’ve had lung issues all my life. #Asthma #CysticFibrosis #ChronicObstructivePulmonaryDisease

    Community Voices

    No, I’m not Ok…

    I’ve been putting on a brave face for the last few hours, but yeah, I’m not ok. On Sunday, I was in Victorville visiting my grandma that I haven’t seen in four years. She’s been mentally ill for as long as I could remember, but I found out that she is in stage 4 renal failure and possibly severe COPD. Because of those factors, her mental capacity is gradually declining. She didn’t even know who I was. Along with her history of undiagnosed paranoia schizophrenia, it has been a lot to process. I think I might have a headache for the next few days behind this. Gradually, I’ve become both sad and angry. I’m sad because of all that is happened and I know that at some point I’m going to be overwhelmed by this. I feel more inclusive to not talk to my friends about this because I believe that this is a level of grief that I am experiencing that I don’t think they will understand. The anger is pretty much from the same place. I’m angry about my current and past relationships with people. One of my long time friends can be emotionally draining to be around and I’ve had to put up boundaries. In hindsight, I’ve realized that a number of my friends in the past have put me in uncomfortable situations and I protected them every time. The last guy that I really liked busted my abandonment wound wide open over a year ago. I do feel pretty empty inside. I felt that since I’m some form of a “ warrior “, I’m supposed to survive no matter what and that I’m not supposed to be tired. Or that since some people see me as a “healer”, my empathy towards others is needed. I’ve had enough! I want to push everyone away at this point. This loneliness that I’m feeling feels permanent and the weight of it all is just too much. #MentalHealth #Depression #BorderlinePersonalityDisorder #Loneliness #familyhistory #toomuch

    11 people are talking about this
    Community Voices
    Community Voices

    New to The Mighty

    Just wanted to introduce myself. I'm Deb, I'm 52, a wife, and have two adult children. I've been battling illnesses for a decade now, so many physical problems that I'm now disabled and stuck in the house for most of the time. I'm also learning how to give up doing the normal things I used to do, although most of the time, it's not pretty. I am mortified and embarrassed to list my issues... but, I feel I need to as I did come here to learn and be a part of a group that understands. So.. here goes.. my list of issues are fibromyalgia (10 years officially diagnosed, 17 years with it), heart disease (including an emergency triple bypass when I was 44), pending pulmonary hypertension diag, asthma, copd, liver disease, kidney disease, stage 3a, hypothyroidism, feet neuropathy, low grade chronic depression, anxiety, and I'm sure I'm missing one or two more. The fibromyalgia really kicks my ass though.

    Right now, I'm in the middle of fighting myself to get up in the morning, and finding something to do besides not getting up and sleeping as much as possible. I know, from reading and my doctors, that activity is supposed to help with this, but to date, I think they have no clue. I am extremely thankful for the medication Trintellix, as it's made it so I don't need 3 entire hours to be able to get up off the bed in the mornings. (Speaking of meds, I'm on a ton) My main doc doesn't believe in giving me hardly anything for pain meds, which, sure would help me start walking on a treadmill.

    Sorry, I meant to type up a quick "hello" and introduce myself, and I've started a tiny book.

    Anywhooo, I'm glad to be here!

    #Fibromyalgia

    13 people are talking about this